Conference Programme
14th International Conference on Thalassaemia and Other Haemoglobinopathies & 16th TIF Conference for Patients and Parents
17-19 November 2017 Grand Hotel Palace, Thessaloniki, Greece
Greek Thalassaemia Association 2
Join TIF e-Academy
Take the Thal e-Course and learn about: • the genetic mechanisms that cause thalassaemia • the history of thalassaemia • blood, its components, and the blood-making process • ineffective erythropoiesis and the life-saving value of blood transfusions in thalassaemia • iron overload, iron therapy and drugs: why and how does iron overload happen, how is it monitored and treated? • Haemopoietic Stem Cell Transplantation and the current clinical advances in thalassaemia cure • the effects of dietary iron intake, recommended diet and physical exercise for patients with thalassaemia • the rights of patients with thalassaemia in education, employment, and other key aspects of life: What national legislations and policies protect their rights across the globe? and many more
Become an expert patient Expert patients can delve deep into the whats and whys of their condition and make meaningful decisions about their health. Very importantly, they can play a key role in the improvement of health, social, economic policies related to their condition and quality of life.
Host: Thalassaemia International Federation (TIF) For more information, visit TIF e-Academy at www.thalassaemia.org.cy or contact [email protected]
17 - 19 NOVEMBER 2017 • THESSALONIKI • GREECE 3
Contents
• Welcome Message 4
• Conference Committees 6
• Opening Ceremony 11
• Scientific Programme 13
• Patients/Parents Programme 16
• Faculty 19
• Oral Presentations 24
• Poster Abstracts 26
• Thessaloniki City Walks & Tours 32
• Side Meetings 34
• Supporters 35
14TH INTERNATIONAL CONFERENCE ON THALASSAEMIA AND OTHER HAEMOGLOBINOPATHIES & THE 16TH TIF CONFERENCE FOR PATIENTS AND PARENTS 4 Welcome Message by the Conference Chairpersons
Dear Friends, The host today, Greece, has not been selected by chance. Greece has played an integral part in the history Welcome to the joint 14th International Conference of thalassaemia, both amongst the founding countries on Thalassaemia and Other Haemoglobinopathies for of TIF through its dynamic patient community, but also Healthcare Professionals, and to the 16th TIF Conference through its dedicated medical community, which has for Patients and Parents. contributed immensely in the better understanding of the pathophysiology and the complex clinical outcomes This International Conference constitutes the largest of the genetic defect, and subsequently to the better biennial educational event of Thalassaemia International understanding of the elements essential in its effective Federation (TIF) and this year we are privileged to control and management. Many Greek names feature announce that it is organized in the beautiful city of in the global literature, both in the early years, turning Thessaloniki in Greece, in collaboration with the Greek dark paths into lit avenues, but also in more recent years Thalasssaemia Federation (EOTHA), with the support of with the sharing of their great success in prevention the Greek Thalassaemia Association (ESTHA) and the and control and research activities with the world, Hellenic Society of Haematology, and has been placed hence providing invaluable information, expertise and under the auspices of the Greek Ministry of Health, the knowledge for others to build on. Hellenic Center for Disease Control & Prevention and the City of Thessaloniki. TIF is greatly indebted to its distinguished Greek collaborators and advisors, but its gratitude extends Organized in the context of TIF’s internationally to all eminent members of is International Advisory renowned Educational Programme, this event is Panel who have all with sincere passion and undivided expected to congregate more than 1000 of the most commitment supported from the beginning of its important actors in the field of thalassaemia and other establishment TIF’s work particularly in the context of its haemoglobinopathies, namely healthcare professionals Educational Programme, through which a measurable across medical and scientific specialisations, patients/ impact can be demonstrated globally. parents, and the industry from over 54 countries of the world. There is understandably still a long way to go considering the huge heterogeneity existing in the Covering a broad range of topics on the prevention and adoption of appropriate policies for the effective control clinical management and multidisciplinary care, and very of these disorders and the consequent gaps in equity of importantly on new advances in the areas of care and access of patients to quality healthcare and other care. cure for thalassaemia and other haemoglobinopathies, in However, science has and continues to meet patients’ addition to patient empowerment and capacity building expectations for both health and quality of life – It is TIF’s, which are key features of TIF’s work, the Conference and every other stakeholders’, responsibility to work will provide a unique forum of sharing knowledge and with the World Health Organisation, Regional decision- experiences and/or building up new, and strengthening making bodies and national governments to ensure existing networks and collaborations. As we all strive that these advances become available, accessible and towards achieving the new set of goals set by the officially adopted by all for the benefit of every patient United Nations and World Health Organisation by 2030, wherever he/she may live. promotion of patient involvement and ensuring patient- centredness in healthcare systems remain important, TIF is moving ahead with new targets and new tools but indispensable targets for TIF. always with the same vision following the same mission.
17 - 19 NOVEMBER 2017 • THESSALONIKI • GREECE 5
The destination of this Conference is the beautiful city of We hope that the programme will meet the highest of Thessaloniki, named after the half-sister of Alexander the your expectations, and with your help and suggestions Great, located in the heart of Macedonia and the second will become better. largest city in Greece. A city with a continuous 3,000 year old history, each step will reveal to you a small treasure! This historic event will serve as a stepping stone Discover the relics of its Roman, Byzantine, Ottoman to build a brighter future together for patients with past and of its formerly dominant Jewish population; haemoglobinopathies. Enjoy a whole district filled with Byzantine churches that are included in UNESCO’s World Heritage list; Feast on Cordially, its diverse and multicultural cuisine with influences from the East; Taste its famous sweet delicacies; Meet the Panos Englezos locals famed for their warmth and open-heartedness. President, Rich in history and culture, Thessaloniki constitutes a Thalassaemia unique mosaic of different cultures and civilizations and International Federation a destination that you’ll definitely fall in love with!
Allow us to thank each and all of you for honouring us with your presence - Our deepest appreciation to the entire Faculty for their unwavering dedication and invaluable contribution and of course to the patients/ parents community for their immense interest to attend this Conference.
This year requests to participate in the Conference Vassileios Dimos from the patients/parents community have come in President masses from all over the world and have surpassed our Greek expectations. This has been an incredible experience Thalassaemia Federation for us and we are terribly saddened that we have unfortunately had to turn down several requests. However, this interest has been the best reward for our work, demonstrating the impact of TIF across the world, but also bringing to us a realization for an even greater responsibility to advocate for the implementation of policies that will safeguard and ensure a better quality of life for every patient and to terminate any violation of their human rights.
14TH INTERNATIONAL CONFERENCE ON THALASSAEMIA AND OTHER HAEMOGLOBINOPATHIES & THE 16TH TIF CONFERENCE FOR PATIENTS AND PARENTS 6 Conference Committees
Conference Chairpersons:
Panos Englezos President, Thalassaemia International Federation (TIF) Vassileios Dimos President, Greek Thalassaemia Federation (EOTHA)
COMMITTEES
Organising Committee Androulla Eleftheriou Executive Director, Thalassaemia International Federation (TIF) Vassileios Dimos President, Greek Thalassaemia Federation (EOTHA) Michael Angastiniotis Medical Advisor, Thalassaemia International Federation (TIF) Dimitris Farmakis Medical Advisor, Thalassaemia International Federation (TIF) Pantelis Lagonis Public Relations - Greek Thalassaemia Federation (EOTHA) Manolis Lampakis Treasurer - Greek Thalassaemia Federation (EOTHA) Achilleas Manafas Vice President B’ - Greek Thalassaemia Federation (EOTHA) Eleni Michalaki General Secretary - Greek Thalassaemia Federation (EOTHA) Styliani Mina President Greek Thalassaemia Association - Thessaloniki (ESTHA) Athanasios Mylonas Board Member of Greek Thalassaemia Association - Thessaloniki (ESTHA) Ioanna Myrilla Vice President A’ - Greek Thalassaemia Federation (EOTHA) Georgios Ntoulos Board Member of Greek Thalassaemia Association - Thessaloniki (ESTHA) Dimitra Paspali Vice-President Greek Thalassaemia Association - Thessaloniki (ESTHA) Nicolaos Psihoyios Ass. Treasurer - Greek Thalassaemia Federation (EOTHA) Charis Pyrgas Board Member - Greek Thalassaemia Federation (EOTHA) Leonidas Roumpatis General Secretary B’ - Greek Thalassaemia Federation (EOTHA) Athanasia Siskoudi Treasurer Greek Thalassaemia Association - Thessaloniki (ESTHA) Cristina Stefanidou TIF Board Member, Board Member - Greek Thalassaemia Federation, Greece Georgios Svarnas General - Secretary Greek Thalassaemia Association - Thessaloniki (ESTHA), Organisational Secretary - Greek Thalassaemia Federation (EOTHA) Chrysovalantis Theodorides Board Member of Greek Thalassaemia Association - Thessaloniki (ESTHA) Nicos Tsikritsakis Board Member - Greek Thalassaemia Federation (EOTHA) Georgios Zeryiotis Registraar - Greek Thalassaemia Federation (EOTHA)
17 - 19 NOVEMBER 2017 • THESSALONIKI • GREECE 7
/ CONFERENCE COMMITTEES
International Scientific Advisory Committee Honorary Chairpersons: Sir David Weatherall Emeritus Professor of Medicine, Molecular Haematology Unit, Weatherall Institute of Molecular Medicine, John Radcliffe Hospital, Oxford Christos Kattamis Emeritus Professor of Paediatrics, University of Athens, ‘Agia Sofia’ Children’s Hospital, Athens, Greece Dimitris Loukopoulos Emeritus Professor of Haematology, First Department of Medicine, University of Athens, Athens, Greece
International Scientific Committee Maria Domenica Cappellini Professor of Haematology, Department of Medicine and Medical Specialties, Istituto di Ricovero e Cura a CarattereScientifico (IRCCS) Ca’ Granda Foundation Maggiore Policlinico Hospital, Milan, Italy Suthat Fucharoen Professor of Haematology, Head of Thalassaemia Research Centre, at Institute of Science & Technology for Research of Mahidol University, Salaya Campus, Thailand John Old Consultant Clinical Scientist &Honoary Reader in Haematology (Oxford University), National Haemoglobinopathy Reference Laboratory, Molecular Haematology, L4, John Radcliffe Hospital, Oxford, UK Antonio Piga Professor of Paediatrics, Thalassaemia &Haemoglobinopathies Centre, Department of Clinical & Biological Sciences, School of Medicine & Hospital S.Luigi Gonzaga, University of Torino, Italy John Porter Professor of Haematology, Head of the Thalassaemia and Sickle Cell Unit, Haematology, Department, University College London, UK Ali Taher Professor of Medicine, Hematology & Oncology, Director - Fellowship and Residents Research Program, Faculty of Medicine, Associate Chair - Research, Department of Internal Medicine, Director - Naef K. Basile Cancer Institute American University of Beirut Medical Center Beirut - Lebanon
National Scientific Committee Evangelos Alexiou Medical Doctor, Consultant Radiologist, Greek National Health Service, Larissa General Hospital, Computed Tomography & Magnetic Resonance Imaging Unit, Larissa, Greece Marina Economou Assistant Professor of Paediatric Haematology, AUTH, 1st Paediatric Clinic, Hippocration General Hospital, Thessaloniki, Greece George Giannakoulas Ass. Professor of Cardiology, AUTH, AHEPA University Hospital, 1st Cardiology Clinic Thessaloniki, Greece Helen Hassapopoulou - Matamis Haematologist, Director of the Blood Centre, AHEPA University Hospital, Thessaloniki, Greece Markisia Karagiorga Paediatrician, Head of Thalassaemia Unit, ‘Agia Sofia’ Children’s Hospital, Athens, Greece Antonis Kattamis Associate Professor of Paediatric Hematology-Oncology Thalassemia Unit, Head First Department of Paediatrics, University of Athens, ‘Agia Sofia’ Children’s Hospital, Athens, Greece Dimitris Kountouras Internist - Hepatologist, “MITERA” Hospital , Athens, Greece Alexandra Kouraklis Haematologist, Director Haematology Dept., Thalassaemia Unit, Patras University Hospital, Patras, Greece
14TH INTERNATIONAL CONFERENCE ON THALASSAEMIA AND OTHER HAEMOGLOBINOPATHIES & THE 16TH TIF CONFERENCE FOR PATIENTS AND PARENTS 8
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Vassilis Ladis Paediatrician, Former Head First Department of Paediatrics, University of Athens, ‘Agia Sofia’ Children’s Hospital, Athens, Greece Ioanna Myrilla Vice President A’ - Greek Thalassaemia Federation (EOTHA), MD, Medical Biopathologist, Physician Director, Laboratory Medicine Department of Haematology, ‘Agia Sofia’ Children’s Hospital, Athens, Greece Constantina Politis Associate Professor of Medicine, Athens University, Scientific Advisor to Hellenic Centre for Disease Control & Prevention, Chairperson of the Blood Transfusion Committee, National Blood Transfusion Centre, Athens, Greece Manolis Sinakos Pathologist - Hepatologist, Professor of Pathology, Aristoteleio University of Thessaloniki, Thessaloniki, Greece Cristina Stefanidou TIF Board Member, Board Member - Greek Thalassaemia Federation, Consultant of Medical Biopathology. Saint Paul General Hospital of Thessaloniki, Thessaloniki, Greece Eythimia Vlachaki Ass. Professor of Haematology - Haemoglobinopathies, AUTH-Thalassaemia unit- 2nd Pathology Clinic, Hippocration General Hospital, Thessaloniki, Greece Ersi Voskaridou Haematologist, Director of Thalassaemia Unit ‘Laiko’ General Hospital, Athens, Greece
International Scientific Collaborators Hasan Abolghasemi Professor of Paediatric Haematology & Oncology, Paediatric Congenital Haematologic Disorders Research Center, Mofid Children’s Hospital, Iranian Blood Transfusion Organisation, Tehran, Iran Athanasios Aessopos Cardiologist, Ex- Director of First Department of Internal Medicine, Athens University Medical School - ‘Laiko’ General Hospital, Athens, Greece Erol Baysal Consultant Molecular Geneticist, Head of Molecular Genetics Unit, Genetics Department, Head of the Prenatal Diagnosis Program for Thalassaemia and Premarital Screening Mandatory Program for Haemoglobinopathies, Al Wasl Maternity & Paediatric Hospital, Senior Lecturer, Dubai Medical College, Dubai, United Arab Emirates Roshan Colah Scientist G & Director -in- Charge, National Institute of Immunohaematology, Mumbai, India Shahina Daar Associate Professor of Haematology, Director of Thalassaemia Centre, Department of Haematology, College of Medicine & Health Sciences, Sultan Qaboos University Hospital, Muscat, Oman Vincenzo de Sanctis Paediatric Endocrinologist, Paediatric & Adolescent Outpatient Clinic, Quisisana Hospital, Ferrara, Italy Laura Distelmaier Haematologist, Haematology Clinic, University of Essen, Essen, Germany Amal El-Beshlawy Professor of Paediatric Haematology, Department of Paediatrics, Cairo University, Cairo, Egypt Hishamshah Ibrahim Senior Consultant Paediatrician and Senior Consultant Haematologist and Oncologist, Paediatric Haematology-Oncology Unit, Paediatric Institute, Hospital Kuala Lumpur, Kuala Lumpur, Malaysia Mehran Karimi Professor of Paediatric Haematology, Department of paediatrics - Division of Haematology, Shiraz Haematology Research Center, Shiraz University of Medical Sciences - School of Medicine, Shiraz, Iran Stefan Lobitz Professor of Medicine, Division of Haematology, Department of Medicine, Faculty of Medicine, Siriraj Hospital, Thailand
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Aurelio Maggio Professor of Haematology, Director of Regional Center for Thalassaemia, Haematology II with Thalassaemia, ‘V. Cervello’ Hospital, Palermo, Italy Nicos Skordis Endocrinologist, Former Director of the Paedoendocrinology Clinic, Arch. Makarios III Hospital, Nicosia, Cyprus Vip Viprakasit Associate Professor in Paediatrics and Paediatric Haematology, Department of Paediatrics and Thalassaemia Centre, Siriraj Hospital, Mahidol University, Bangkok, Thailand Malcolm Walker Director of HI Cardiovascular, Consultant Cardiologist & Clinical Director, Hatter Cardiovascular Institute, London, UK Evangelia Yannaki Haematologist, Affiliate Associate Professor, University of Washington, Director Gene and Cell Therapy Center, Hematology Dept. - BMT Unit, G. Papanicolaou Hospital, Thessaloniki, Greece
Abstract Review Committee Michael Angastiniotis Medical Advisor, Thalassaemia International Federation (TIF) Victoria Antoniadou Educational Scientist, Thalassaemia International Federation (TIF) Maria Domenica Cappellini Professor of Haematology, Department of Medicine and Medical Specialties, Istituto di Ricovero e Cura a CarattereScientifico (IRCCS) Ca’ Granda Foundation Maggiore Policlinico Hospital, Milan, Italy Vincenzo de Sanctis Paediatric Endocrinologist, Paediatric & Adolescent Outpatient Clinic, Quisisana Hospital, Ferrara, Italy Dimitris Farmakis Medical Advisor, Thalassaemia International Federation (TIF) Suthat Fucharoen Professor of Haematology, Head of Thalassaemia Research Centre, at Institute of Science & Technology for Research of Mahidol University, Salaya Campus, Thailand Christos Kattamis Emeritus Professor of Paediatrics, University of Athens, ‘Agia Sofia’ Children’s Hospital, Athens, Greece Dimitris Loukopoulos Emeritus Professor of Haematology, First Department of Medicine, University of Athens, Athens, Greece John Old Consultant Clinical Scientist & Honoary Reader in Haematology (Oxford University), National Haemoglobinopathy Reference Laboratory, Molecular Haematology, L4, John Radcliffe Hospital, Oxford, UK Antonio Piga Professor of Paediatrics, Thalassaemia &Haemoglobinopathies Centre, Department of Clinical & Biological Sciences, School of Medicine & Hospital S.Luigi Gonzaga, University of Torino, Italy John Porter Professor of Haematology, Head of the Thalassaemia and Sickle Cell Unit, Haematology, Department, University College London, UK Ali Taher Professor of Medicine, Hematology & Oncology, Director - Fellowship and Residents Research Program, Faculty of Medicine, Associate Chair - Research, Department of Internal Medicine, Director - Naef K. Basile Cancer Institute American University of Beirut Medical Center Beirut - Lebanon Joanne Traeger-Synodinos Associate Professor of Genetics, Department of Medical Genetics, National and Kapodistrian University of Athens, Choremeio Research Laboratory, ‘Agia Sofia’ Children’s Hospital, Athens, Greece Vip Viprakasit Associate Professor in Paediatrics and Paediatric Haematology, Department of Paediatrics and Thalassaemia Centre, Siriraj Hospital, Mahidol University, Bangkok, Thailand
14TH INTERNATIONAL CONFERENCE ON THALASSAEMIA AND OTHER HAEMOGLOBINOPATHIES & THE 16TH TIF CONFERENCE FOR PATIENTS AND PARENTS 10
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Eythimia Vlachaki Ass. Professor of Haematology - Haemoglobinopathies, AUTH-Thalassaemia unit- 2nd Pathology Clinic, Hippocration General Hospital, Thessaloniki, Greece Evangelia Yannaki Haematologist, Affiliate Associate Professor, University of Washington, Director Gene and Cell Therapy Center, Hematology Dept. - BMT Unit, G. Papanicolaou Hospital, Thessaloniki, Greece
International Patients/Parents Advisory Committee Her Highness Sheikha TIF Board Member, Emirates Thalassemia Society, United Arab Emirates Sheikha Bint Seif Al-Nahyan SaeedAl Awadhi TIF Board Member - Ass. Treasurer, Emirates Thalassemia Society, United Arab Emirates Loris Brunetta TIF Board Member, Associazione LigureThalassemici, Italy George Constantinou TIF Board Member - Ass. Secretary, UK Vassileios Dimos President - Greek Thalassaemia Federation (EOTHA), Greece Riyad Elbard TIF Board Member - Treasurer, Thalassaemia Foundation of Canada, Canada Robert Ficarra TIF Board Member, Cooley’s Anemia Foundation, USA Mouna Haraoui TIF Board Member, Chronic Care Center, Lebanon Fatemeh Hashemi TIF Board Member, Charity Foundation for Special Diseases, Iran Ivan Ivanov TIF Board Member, Thalassaemics’ Organization in Bulgaria, Bulgaria Pantelis Lagonis Public Relations - Greek Thalassaemia Federation (EOTHA), Greece Manolis Lampakis Treasurer - Greek Thalassaemia Federation (EOTHA), Greece Duru Malyali TIF Board Member, TADAD, Turkey Achilleas Manafas Vice President B’ - Greek Thalassaemia Federation (EOTHA), Greece Eleni Michalaki General Secretary - Greek Thalassaemia Federation (EOTHA), Greece Ramli MohdYunus TIF Board Member, Federation of Malaysian Thalassaemia Societies, Malaysia Gulush Mustaphayeva TIF Board Member, Thalassaemia Association “Savab Dünyasi”, Azerbaijan Elena Mylona TIF Board Member, Cyprus Thalassaemia Association, Cyprus Nicolaos Psihoyios Ass. Treasurer - Greek Thalassaemia Federation (EOTHA), Greece Charis Pyrgas Board Member - Greek Thalassaemia Federation (EOTHA), Greece Leonidas Roumpatis General Secretary B’ - Greek Thalassaemia Federation (EOTHA), Greece Anton Skafi TIF Board Member, Thalassemia Patients Friends Society (TPFS), Palestine Cristina Stefanidou TIF Board Member, Board Member - Greek Thalassaemia Federation (EOTHA), Greece Georgios Svarnas Organisational Secretary - Greek Thalassaemia Federation (EOTHA), Greece Gabriel Theophanous TIF Board Member, President UK Thalassaemia Society, UK Nicos Tsikritsakis Board Member - Greek Thalassaemia Federation (EOTHA), Greece Shobha Tuli TIF Board Member - Vice President, Thalassemics India, India Georgios Zeryiotis Registraar - Greek Thalassaemia Federation (EOTHA), Greece
17 - 19 NOVEMBER 2017 • THESSALONIKI • GREECE 11 Opening Ceremony
Friday 17th November 2017 / Voula Patoulidou Hall
Master of Ceremonies: A. Eleftheriou & C. Papageorgiou
18.00 - 19.00 Opening remarks by:
H.E. the Minister of Health - Greece, A. Xanthos
H.E. the Minister of Health - Cyprus, G. Pamborides
President, National Confederation of Disabled People - Greece, I. Vardakastanis
General Secretary of Hellenic Society of Haematology, I. Mpatsis
President of Greek Thalassaemia Association, S. Mina
President of Greek Thalassaemia Federation, V. Dimos
President of Thalassaemia International Federation, P. Englezos
19.00 - 19.15 TIF Award Ceremony
KEYNOTE PRESENTATIONS
Chairpersons: C. Kattamis & D. Loukopoulos
19.15 - 19.30 Haemoglobinopathies Care & Cure: Have we reached the end? - J. Porter
19.30 - 19.45 Migration: The aftershocks to the provision of healthcare - S. Lobitz
19.45 - 20.00 Patients’ as Equal Partners in Decision-Making: The Global Reality - A. Mukherjee
Cocktail Reception in Lobby Area
The program of the 14th International Conference on Thalassaemia and Other Haemoglobinopathies for Healthcare Professionals has been reviewed and approved for CME accreditation by the European Board for Accreditation in Hematology (EBAH).
The EBAH has approved this educational activity for a maximum number of 11 CME credits.
Each physician should only collect credits for time that she/he actually spent in the educational activity.
Instructions on how to obtain CME credits are found in the HCP Delegate Bag
14TH INTERNATIONAL CONFERENCE ON THALASSAEMIA AND OTHER HAEMOGLOBINOPATHIES & THE 16TH TIF CONFERENCE FOR PATIENTS AND PARENTS 12
The Organizers would like to thank the following volunteers for their support:
Aikaterini Fillipou Eleni Macha Maria Petra Anastasia-Mantiana Ziogala Georgia Markou Maria Siozou Anna Favrikanou Gianna Evaggelidou Niki Tamtami Anton Skafi Hara Lioliou Panagiota Parakoila Antonios Moutropoulos Irene Mitzikou Parthenopi Michailidou Athanasia Damianidou Kyriaki Koutsianou Rallou Fillipou Chrysoula Gkagkza Maria Karyda Sophia Koiou Eirini Skondrani Maria Koutalopoulou Stella Pelteki Elaine Miller Maria Panagopoulou Valentini Mavromati
17 - 19 NOVEMBER 2017 • THESSALONIKI • GREECE 13 Scientific Programme Saturday 18th November 2017 / Hall Olympia A & B
08.45 - 10.15 Session 1: Diagnosis & Prevention Chairpersons: D. Loukopoulos & J. Traeger-Synodinos
08.45 - 09.00 Diagnosis of Haemoglobinopathies: New scientific advances - C.L. Harteveld
09.00 - 09.15 New Challenges in diagnosis of haemoglobinopathies: Migration of Populations - J. Old
09.15 - 09.30 Global Overview of Neonatal Screening Practices of Haemoglobinopathies - S. Lobitz
09.30 - 09.45 Informed choice in a multicultural world - M. Petrou
09.45 - 10.00 Diagnostic strategies on hemoglobinopathy testing, the role of a reference laboratory in the USA - J. Oliveira
10.00 - 10.15 Discussion
10.15 - 11.30 Session 2: Cornerstones of Clinical Management of Haemoglobinopathies 10.00 - 11.00 Chairpersons: K. Stamoulis, C. Politis & E. Hassapopoulou Coffee available Exhibition Area 10.15 - 10.30 Optimal Blood Transfusion Therapy in Haemoglobinopathies - J. Porter (Olympia C)
10.30 - 10.45 Iron Overload & Chelation in Haemoglobinopathies - A. Taher
10.45 - 11.00 Multidisciplinary Care: the UK Experience - P. Eleftheriou
11.00 - 11.15 Best practices in assessing iron overload today: A need for Guidelines? - V. Viprakasit
11.15 - 11.30 Discussion
11.30 - 13.00 Session 3: Managing Complications in Haemoglobin Disorders - New Advances (I) Chairpersons: D. Farmakis & I. Koskinas
11.30 - 11.50 Endocrine complications - V. de Sanctis
11.50 - 12.10 Cardiac complications - M. Walker
12.10 - 12.30 Liver complications - M.D. Cappellini
12.30 - 12.50 Renal complications - A. Taher
12.50 - 13.00 Discussion 12.30 - 14.00 Lunch available 13.00 - 14.00 Session 4: Haemoglobinopathies in Focus: Sickle Cell Disease Exhibition Area (Olympia C) Chairpersons: A. Taher, M. Economou & M. Dimopoulou
13.00 - 13.15 Advances in Clinical Management of Sickle Cell Disease in Childhood & Adolescence - M. Abboud
13.15 - 13.30 Advances in Clinical Management of Sickle Cell Disease in Adulthood - F. Shah
13.30 - 13.50 Challenges to Management of Pain in Sickle Cell Disease - J. Kanter
13.50 - 14.00 Discussion
14TH INTERNATIONAL CONFERENCE ON THALASSAEMIA AND OTHER HAEMOGLOBINOPATHIES & THE 16TH TIF CONFERENCE FOR PATIENTS AND PARENTS 14
/ SCIENTIFIC PROGRAMME
Saturday 18th November 2017 / Hall Olympia A & B
14.00 - 15.30 SATELLITE SESSION 1 - Supported by Welcome and Introduction - A. Kattamis Recognition of haemoglobinopathies as a global health problem - F. Piel Decision-making in iron chelation treatment: Less iron, longer life - A. Kattamis Breaking down the barriers in thalassaemia: Enhancing patient adherence - A. Taher Q&A Adherence to iron chelation therapy: A patient’s perspective K. Tsurlis Q&A Q&A/panel discussion: Moving patient care forward - Led by A. Kattamis Summary/close - A. Kattamis
15.30 - 16.30 Session 5: Challenges in Delivering Treatment Chairpersons: V. Ladis, A. Kouraklis & E. Vlachaki
15.30 - 15.45 National policies in ensuring access to quality & safety of drugs: A challenge or a prerequisite - M. Hadipour
15.45 - 16.15 Adherence to Treatment: Doctor vs Patient Perspective - F. Shah & G. Kaltsounis
16.15 - 16.30 Patient care: Unmet needs globally - M. Angastiniotis
16.30 - 17.30 Session 6: Improving quality healthcare - Networks & Accreditation Panellists: M. Angastiniotis, L. Brunetta, G. Constantinou, P. Eleftheriou, S. Fucharoen, A. Kattamis & A. Taher
16.30 - 16.45 The EUROBLOODNET Experience - M.D. Cappellini
16.45 - 17.00 Global initiatives for improving quality healthcare by the Thalassaemia International Federation - A. Polynikis
17.00 - 17.30 Panel Discussion - Challenges in securing quality healthcare services for haemoglobinopathy patients 17.00 - 18.00 Coffee available 17.30 - 19.00 SATELLITE SESSION 2 - Supported by Exhibition Area (Olympia C) Red Blood Cell pathogen inactivation: Improving the safety of transfusion therapy - R. Benjamin
Clinical experience with pathogen inactivated RBCs in the treatment of thalassemia - Y. Aydinok
Pathogen Inactivated RBCs in support of Sickle Cell Disease - J. Porter
17 - 19 NOVEMBER 2017 • THESSALONIKI • GREECE 15
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Sunday 19th November 2017/ Hall Olympia A & B
08.30 - 09.30 Free Oral Presentations (see page 24)
09.30 - 10.30 Session 7: Managing Complications in Haemoglobin Disorders - New Advances (II) Chairpersons: M. Karagiorga & D. Pantelidou
09.30 - 09.50 Osteoporosis - E. Voskaridou
09.50 - 10.10 Pain: Time for more action? - F. Shah
10.10 - 10.20 The role of CNS in the care of haemoglobinopathy patients - B. Hylton
10.20 - 10.30 Discussion
10.30 - 11.15 Session 8: Quality of Life in Patients with Haemoglobin Disorders Chairpersons: R. Elbard, G. Theophanous & A. Skafi
10.30 - 10.40 Quality of Life: Transfusion Dependent Thalassaemia vs Non-Transfusion Dependent 10.30 - 11.30 Thalassaemia - M. Karimi Coffee available Exhibition Area 10.40 - 10.50 Moving towards Patient Reported Outcomes - V. Viprakasit (Olympia C)
10.50 - 11.00 Let’s Talk About Thal: How Communication Can Improve Quality of Life - L. Levine
11.00 - 11.15 Discussion
11.15 - 13.00 Session 9: New Advances in Haemoglobinopathies Chairpersons: D. Kountouras & E. Yannaki
11.15 - 11.45 The changing face of Management: Latest update of on-going clinical trials - J. Porter
11.45 - 12.00 Advances in Gene Therapy Trials - F. Locatelli
12.00 - 12.15 HCV Treatment Advances for Thalassaemia Patients - G. Papatheodorides
12.15 - 12.30 Gene Editing - B. Lundberg
12.30 - 12.40 The patients’ position in the New Advances: Expectation or Dilemma? - G. Constantinou
12.30 - 13.00 Discussion
13.00 - 13.30 Closing remarks and Moving Forward - A new Era for TIF Building on Experience The Patient Perspective: P. Englezos, V. Dimos, C. Papageorgiou, S. Tuli & R. Ficarra 13.00 - 14.30 Medical / Scientific Perspective: C. Kattamis & D. Loukopoulos Lunch available Exhibition Area (Olympia C) What is the new era bringing? A. Taher
13.30 - 14.30 LUNCH
14TH INTERNATIONAL CONFERENCE ON THALASSAEMIA AND OTHER HAEMOGLOBINOPATHIES & THE 16TH TIF CONFERENCE FOR PATIENTS AND PARENTS 16 Patients/Parents Programme
Friday 17th November 2017
15.00 - 17.00 TIF Board Meeting **by invitation only**
OPENING CEREMONY - (see page 11)
Saturday 18th November 2017 Voula Patoulidou Hall 09.30 - 10.00 Session: International Initiatives Chairpersons: E. Michalaki & G. Svarnas
09.30 - 09.40 Greece: Pigi Zois - V. Perifanis 09.40 - 09.50 China: Belt & Road - L. Qiu 09.50 - 10.00 Pakistan: Bait-Ul-Mal - A. Waheed 10.00 - 11.00 10.15 - 13.00 ** Live Transmission from Scientific Programme - (see page 13) Coffee available Exhibition Area 13.15 - 15.00 TIF General Assembly & Elections {Lunch provided} (Lobby)
Grand Ballroom 15.00 - 16.00 Capacity Building of National Thalassaemia Associations Moderators: P. Eliades, C. Stefanidou & L. Levine 13.00 - 14.30 Lunch available 15.00 - 15.10 Brief Introduction by Moderators Exhibition Area (Lobby) 15.10 - 16.10 Breakout Group Discussions Table I: Fund-raising - Coordinators: M. Hadjidemetriou & H. Ziavras Table II: Is thalassaemia a disability? - Coordinators: A. Skafi & V. Myrilla Table III: Working with Government - Coordinators: S. Tuli & E. Mylona Table IV: Transition from Childhood to Adolescence and Adulthood - Coordinators: A. Mukherjee & R. Elbard Table V: Continuing challenges in Thalassaemia - Coordinators: S. Mina & E. Tsamadou
16.10 - 16.40 Presentation of Conclusions by Breakout Groups
Voula Patoulidou Hall 16.40 - 16.50 Strategies in Communications - M. Hadjidemetriou & Z. Malik
16.50 - 17.00 Safety & Efficacy of Drugs: What do I need to know? - M. Hadipour
17.00 - 17.10 Key Topic: Successful BMT stories and experiences from the UAE - A. Abbas
17.15 - 18.00 Session: The Digital Era of TIF Chairpersons: R. Elbard & S. Shakir 17.00 - 18.00 Coffee available 17.15 - 17.30 TIF’s Patient Connect Project - A. Skafi Exhibition Area (Lobby) 17.30 - 17.45 Electronic Educational Platform - V. Antoniadou
17.45 - 18.00 Thali Me - H. McMicking
18.00 - 19.00 TIF Board Meeting **by invitation only**
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/ PATIENTS/PARENTS PROGRAMME
Sunday 19th November 2017 / Voula Patoulidou Hall
09.30 - 10.30 Q&A with Experts Coordinator: A. Eleftheriou
Panelists: J. Porter, M.D. Cappellini, A. Taher, S. Fucharoen, P. Eleftheriou, V. Viprakasit & E. Vlachaki
10.30 - 13.00 ** Live Transmission from Scientific Programme - (see page 15)
Hall Olympia A & B
13.00 - 13.30 Closing remarks and Moving Forward - A new Era for TIF
Building on Experience The Patient Perspective: P. Englezos, V. Dimos, C. Papageorgiou, S. Tuli & R. Ficarra Medical / Scientific Perspective: C. Kattamis & D. Loukopoulos
What is the new era bringing? A. Taher
13.30 - 14.30 LUNCH
14TH INTERNATIONAL CONFERENCE ON THALASSAEMIA AND OTHER HAEMOGLOBINOPATHIES & THE 16TH TIF CONFERENCE FOR PATIENTS AND PARENTS 18
@bluebirdbio @bluebird_ /bluebirdbio
17 - 19 NOVEMBER 2017 • THESSALONIKI • GREECE
bbb_Thal_Ad_16.5Cx23.5C.indd 1 9/13/17 11:48 AM 19 Faculty
Abbas Adil Abdullah Mohd Emirates Thalassemia Society, United Arab Emirates Abboud Miguel Paediatric Haematology/Oncology, Department of Paediatrics and Adolescent Medicine, American University of Beirut Medical Centre, Beirut, Lebanon Angastiniotis Michael Medical Advisor, Thalassaemia International Federation (TIF) Antoniadou Victoria Educational Scientist, Thalassaemia International Federation (TIF) Aydinok Yeşim Professor of Paediatric Haematology, Ege University Hospital, Department of Pediatric Hematology, Director of Hospital Blood Bank, Izmir, Turkey Benjamin Richard Chief Medical Officer, Clinical Development and Medical Affairs, Cerus Corporation, Concord, USA Brunetta Loris TIF Board Member, Associazione Ligure Thalassemici, Italy Cappellini Maria Domenica Professor of Haematology, Department of Medicine and Medical Specialties, Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS) Ca’ Granda Foundation Maggiore Policlinico Hospital, Milan, Italy Constantinou George TIF Board Member - Ass. Secretary, UK de Sanctis Vincenzo Paediatric Endocrinologist, Paediatric & Adolescent Outpatient Clinic, Quisisana Hospital, Ferrara, Italy Dimopoulou Maria Haematologist, Thalassemia and Sickle Cell Disease Center, ‘Laiko’ Hospital, Athens, Greece Dimos Vassileios President, Greek Thalassaemia Federation (EOTHA) Economou Marina Assistant Professor of Paediatric Haematology, AUTH, 1st Paediatric Clinic, Hippocration General Hospital, Thessaloniki, Greece Elbard Riyad TIF Board Member - Treasurer, Thalassaemia Foundation of Canada, Canada Eleftheriou Androulla Executive Director, Thalassaemia International Federation (TIF) Eleftheriou Perla Consultant Haematologist, Joint Red Cell Unit, Haematology Department, University College London NHS Foundation Trust, London, UK Eliades Photis Health Psychologist, Head of Training for Global Multinational company, Patient Advocate, Cyprus Englezos Panos President, Thalassaemia International Federation (TIF)
Farmakis Dimitris Medical Advisor, Thalassaemia International Federation (TIF) Ficarra Robert TIF Board Member, Cooley’s Anemia Foundation, USA Fucharoen Suthat Professor of Haematology, Head of Thalassaemia Research Centre, at Institute of Science & Technology for Research of Mahidol University, Salaya Campus, Thailand Hadipour Dehshal Mehregan Pharmacist, Iranian Thalassaemia Society, Iran
Hadjidemetriou Maria Executive Committee Member, Cooley’s Anemia Foundation, USA Harteveld Cornelius Clinical laboratory geneticist, Laboratory for Diagnostic Genome analysis (LDGA), Dept of Clinical Genetics, Leiden, Netherlands Hassapopoulou - Matamis Helen Haematologist, Director of the Blood Centre, AHEPA University Hospital, Thessaloniki, Greece
14TH INTERNATIONAL CONFERENCE ON THALASSAEMIA AND OTHER HAEMOGLOBINOPATHIES & THE 16TH TIF CONFERENCE FOR PATIENTS AND PARENTS 20
Hylton Bernadette Haemoglobinopathy Clinical Nurse Specialist, UCLH, Department of Haematology, London, UK Kaltsounis George Biopathologist, AHEPA University Hospital, Thessaloniki, Greece Kanter Julie Paediatric-Haematologist/Oncologist, Director of Sickle Cell ResearchDivision of Pediatrics, Medical University of South Carolina, Charleston, South Carolina, USA Karagiorga Markisia Paediatrician, Head of Thalassaemia Unit, ‘Agia Sofia’ Children’s Hospital, Athens, Greece Karimi Mehran Professor of Paediatric Haematology, Department of paediatrics - Division of Haematology, Shiraz Haematology Research Center, Shiraz University of Medical Sciences - School of Medicine, Shiraz, Iran Kattamis Christos Emeritus Professor of Paediatrics, University of Athens, ‘Agia Sofia’ Children’s Hospital, Athens, Greece Kattamis Antonis Associate Professor of Paediatric Hematology-Oncology Thalassemia Unit, Head First Department of Paediatrics, University of Athens, ‘Agia Sofia’ Children’s Hospital, Athens, Greece Koskinas Ioannis Professor of Pathology - Hepatology, Medical School of Athens, Director of Hippokrateion Hospital, Athens, Greece Kountouras Dimitris Internist - Hepatologist, “MITERA” Hospital , Athens, Greece Kouraklis Alexandra Haematologist, Director Haematology Dept., Thalassaemia Unit, Patras University Hospital, Patras, Greece Ladis Vassilis Paediatrician, Former Head First Department of Paediatrics, University of Athens, ‘Agia Sofia’ Children’s Hospital, Athens, Greece Levine Laurice Program Consultant, Children’s Center for Cancer & Blood Diseases, Children’s Hospital, Los Angeles, USA Lobitz Stefan Paediatrician, Clinics of the City of Cologne, Pediatric Hospital Amsterdamer, Division of Haematology, Cologne, Germany Locatelli Franco Professor of Paediatrics, University of Pavia, Director, Department of Pediatric Hematology & Oncology, IRCCS Ospedale Pediatrico Bambino Gesù Piazza Sant’Onofrio, Rome, Italy Loukopoulos Dimitris Emeritus Professor of Haematology, First Department of Medicine at the University of Athens, Athens, Greece Lundberg Bill Doctor of Medicine, Chief Scientific Officer, Crispr Therapeutics, Boston, USA Malik Zeshan President, Thalassaemia Association of Belgium (ASLB), Belgium McMicking Hatley Forrest Digital Marketing Coordinator, Curatio, Canada Michalaki Eleni General Secretary - Greek Thalassaemia Federation (EOTHA), Greece Mina Styliani Developmental Psychologist, Child and Adolescent Psychiatric Clinic, Hippokratio General Hospital, President Greek Thalassaemia Association - Thessaloniki (ESTHA), Greece Mylona Elena TIF Board Member - Cyprus Thalassaemia Association, Cyprus Myrilla Ioanna Vice President A’ - Greek Thalassaemia Federation (EOTHA),MD, Medical Biopathologist, Physician Director, Laboratory Medicine Department of Haematology, ‘Agia Sofia’ Children’s Hospital, Athens, Greece
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Old John Consultant Clinical Scientist & Honoary Reader in Haematology (Oxford University), National Haemoglobinopathy Reference Laboratory, Molecular Haematology, L4, John Radcliffe Hospital, Oxford, UK Oliveira Jennifer Consultant Haematopathologist, Department of Laboratory Medicine and Pathology, Co-Director Metabolic Hematology Laboratory, Mayo Clinic, Rochester, USA Pantelidou Despoina Haematologist, 1st Pathology Clinic and Thalassaemia Unit AHEPA University Hospital,Thessaloniki, Greece Papageorgiou Costas President P.E.P.P.A.M.A, Former President Thalassaemia International Federation (TIF), Athens, Greece Papatheodoridis George Professor in Medicine & Gastroenterology, Athens University Medical School, Director of the Academic Department of Gastroenterology, ‘Laiko’ General Hospital, Athens, Greece Perifanis Vassilis Assistant Professor in Hematology, Aristotle University of Thessaloniki, 1st Propedeutic Pathology Clinic, AHEPA University Hospital, Thessaloniki, Greece Petrou Mary Honorary Senior Lecturer, Institute of Women’s Health, University College London, London, UK Piel Frédéric Faculty of Medicine, School of Public Health, Imperial College, London, UK Politis Constantina Associate Professor of Medicine, Athens University, Scientific Advisor to Hellenic Centre for Disease Control & Prevention, Chairperson of the Blood Transfusion Committee, National Blood Transfusion Centre, Athens, Greece Polynikis Andreas Public Health Consultant, Thalassaemia International Federation, Cyprus Porter John Professor of Haematology, Head of the Thalassaemia and Sickle Cell Unit, Haematology, Department, University College London, UK Qiu Lily President Angel Mom Charity Foundation, China Shah Farrukh Consultant Haematologist, Department of Haematology, Whittington Hospital, London, UK Shakir Aishath Shifneez Patient Advocate & Executive Committee Member, Maldivian Thalassaemia Society, Maldives
Sheikh Abid Waheed Managing Director, Pakistan Bait-Ul-Mal, Government of Pakistan, Islamabad, Pakistan Skafi Anton TIF Board Member, Thalassemia Patients Friends Society (TPFS), Palestine Stamoulis Kostas Director of National Blood Transfusion Centre, Athens, Greece Stefanidou Cristina TIF Board Member, Board Member - Greek Thalassaemia Federation (EOTHA), Consultant of Medical Biopathology, Saint Paul General Hospital of Thessaloniki, Thessaloniki, Greece Svarnas Georgios Organisational Secretary - Greek Thalassaemia Federation (EOTHA) Taher Ali Professor of Medicine, Hematology & Oncology, Director - Fellowship and Residents Research Program, Faculty of Medicine, Associate Chair - Research, Department of Internal Medicine, Director - Naef K. Basile Cancer Institute American University of Beirut Medical Center Beirut - Lebanon
14TH INTERNATIONAL CONFERENCE ON THALASSAEMIA AND OTHER HAEMOGLOBINOPATHIES & THE 16TH TIF CONFERENCE FOR PATIENTS AND PARENTS 22
Taneja Mukherjee Anubha Attorney, Director of Public Affairs & Advocacy Practice, Genesis Burson-Marsteller, Joint Secretary, Thalassemics India, Member-Secretary, Thalassemia Patients Advocacy Group, India Theophanous Gabriel TIF Board Member, President UK Thalassaemia Society, UK Traeger-Synodinos Joanne Associate Professor of Genetics, Department of Medical Genetics, National and Kapodistrian University of Athens, Choremeio Research Laboratory, ‘Agia Sofia’ Children’s Hospital, Athens, Greece Tsamadou Eftyxia Consultant Child Psychiatrist, Child and Adolescent Psychiatric Clinic, Hippokratio General Hospital, Thessaloniki, Greece Tsurlis Kostas Patient, Germany Tuli Shobha TIF Board Member - Vice President, Thalassemics India, India Viprakasit Vip Associate Professor in Paediatrics and Paediatric Haematology, Department of Paediatrics and Thalassaemia Centre, Siriraj Hospital, Mahidol University, Bangkok, Thailand Vlachaki Eythimia Ass. Professor of Haematology - Haemoglobinopathies, AUTH-Thalassaemia unit- 2nd Pathology Clinic, Hippocration General Hospital, Thessaloniki, Greece Voskaridou Ersi Haematologist, Director of Thalassaemia Unit ‘Laiko’ General Hospital, Athens, Greece Walker Malcolm Director of HI Cardiovascular, Consultant Cardiologist & Clinical Director, Hatter Cardiovascular Institute, London, UK Yannaki Evangelia Haematologist, Affiliate Associate Professor, University of Washington, Director Gene and Cell Therapy Center, Hematology Dept. - BMT Unit, G. Papanicolaou Hospital, Thessaloniki, Greece Ziavras Helen President, Thalassemia Foundation of Canada, Canada
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14TH INTERNATIONAL CONFERENCE ON THALASSAEMIA AND OTHER HAEMOGLOBINOPATHIES & THE 16TH TIF CONFERENCE FOR PATIENTS AND PARENTS 24 Oral Presentations
Sunday 19th November 2017
08.30 - 09.30 Complications of Iron Overload / Hall: Olympia B Moderators: V. de Sanctis & D. Farmakis The Strong Link Between Pancreas and Heart in Thalassemia Major - L. Pistoia Premature Atherosclerosis in Children with Beta-Thalassemia Major: New Diagnostic Marker - L. Sherief Hepatocellular carcinoma (HCC) in multi-transfused patients with thalassemia (TM) in Greece. Risk factors and therapeutic Approaches - D. Kountouras Peripheral Blood Lymphocytes’ Sub Populations in Adult Transfusion Dependent Beta Thalassaemia Patients - P. Stark Long Term Prospective Predictors for Vascular Events and Cardiac Complications in Thalassemia Major Patients - L. Pistoia Study of the Mean Platelet Volume as a Marker of Pulmonary Hypertension in Thalassaemic Patients - U. El Safy
Pancreatic Iron Loading in Hemoglobinopathies - L. Pistoia Real Life Experience of Sitagliptin Use in Patients with Beta-Thalassaemia Major and Diabetes - P. Tzoulis Discussion
08.30 - 09.30 Gene Therapy & Gene Regulation / Hall: V. Patoulidou Moderators: E. Yannaki & F. Locatelli Isoform-Specific Disruption of The BCL11A Transcription Factor - C. W. Lederer Renal iron deposition by magnetic resonance imaging in pediatric β-thalassemia major patients: relation to renal biomarkers, total body iron and chelation therapy - M. Elalfy Knockdown of Aberrant HBBIVSI-110(G>A) MRNA Restores HBB Expression and Enhances Gene Therapy By Gene Addition in Primary Erythroid Cells - C. W. Lederer Development of a GalNAc-siRNA Conjugate Targeting a Key Regulator of the BMP/ SMAD Signalling Pathway for Treatment of Iron Overload - U. Schaeper The A1 Insulator Reduces The Genotoxicity of a Beta-Globin Lentiviral Vector - P. Papayanni The Role of Polymorphisms in BCL 11A, HBS1L-MYB Intergenic and g Globin Promoter Region on the HBF Induction and Clinical Severity of β- Thalassaemia - P. Hariharan Gene Therapy for Beta Thalassemia: Initial Results From the Phase I/II TIGET-BTHAL Trial of Autologous Hematopoietic Stem Cells Genetically Modified With Globe Lentiviral Vector - F. Giglio Genome-Editing of BCL11A as Potential Therapy for Beta-Thalassemia and Sickle Cell Disease - M. Holmes Discussion
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/ ORAL PRESENTATIONS
08.30 - 09.30 Non-Transfusion Dependent Thalassaemia / Hall: Ilida Moderators: S. Fucharoen & M.D. Cappellini Correlation Between FIBROSCAN and MRI T2* To Estimate Degree of Hepatic Iron Overload in Thalassemia Major Patients - J. Kaur Clinical features and associated genotypes in Iranian H disease - S. Zeinali Complications Pattern and Burden of the Disease In Patients Affected by Beta- Thalassaemia Major - F. Bonifazi Association between serum ferritin reduction and film-coated versus dispersible tablet formulations of deferasirox: A post-hoc analysis of mediation by patient-reported outcomes from the ECLIPSE trial - A. Taher Predictors Of Adverse Outcome in Patients With Sickle Cell Disease in SQUH - S. Alkindi Increased Hb F in Beta Thalassaemia Intermedia patients in Sri Lanka associated with Extended Alpha Globin Genes - S. Perera Hemanext Novel Blood Storage System Significantly Improves Red Blood Cell Quality and Provides Promise of Improving Consistency, Safety And Efficacy of Chronic Transfusions - A. Dunham ITHANET: The Information and Database Community Portal for Haemoglobinopathies - P. Kountouris Discussion
08.30 - 09.30 Quality of Life & Miscellaneous / Hall: Kallipateira Moderators: D. Loukopoulos & M. Karimi Transition Navigator More Than Just Transfer? Staff Perceptions of a Novel Transition Program and Role - B. Allemang Patients’ Satisfaction with the Quality of Nursing Care in Thalassaemia Units - K. Al-Awamreh Twice Daily Dosing of Deferasirox Significantly Improves Clinical Efficacy in Transfusion Dependent Thalassemias Who Were Inadequate Responders to Standard Once Daily Dose - G. Bahoush Comprehensive Structured Transition Program With Dedicated Transition Navigator Reduced Lost to Follow-Up And Improved Medication Adherence in Adolescents and Young Adults With Sickle Cell Disease and Thalassemia - B. Allemang Patient Lead Organisations in Successful Policy Advocacy: Lessons From the Maldives - J. Saleem Get Connected! Mission #IronCtrl: The Ironchelation Challenge Campaign - A.S. Shakir Outcome of Home-Based Continuous Deferoxamine Intravenous Infusion via Peripherally Inserted Central Catheter in Thalassemia Major - H. Dewedar CRIZANLIZUMAB, A P-Selectin Inhibitor, Increases The Likelihood of Not Experiencing a Sickle Cell-Related Pain Crisis (SCPC) in Patients With Sickle Cell Disease (SCD) While on Treatment - J. Kanter Discussion
14TH INTERNATIONAL CONFERENCE ON THALASSAEMIA AND OTHER HAEMOGLOBINOPATHIES & THE 16TH TIF CONFERENCE FOR PATIENTS AND PARENTS 26 Poster Abstracts Poster Session I / Olympia D Hall 17th November 2017, 17.30 - 18.30 • 18th November 2017, 10.00 - 14.00 Blood transfusion: Providing Thalassaemia Patients with Blood in Azerbaijan - Presenter: C. Asadov Role of Haemovigilance Acuity for Quality Transfusion: Challenge from The Beginning, an Emergent Country Perception - Presenter: T. Imran Frequency of clinically significant alloantibodies as a consequence of multiple transfusion in Heamogolinopathies in different ethnic population of Pakistan - Presenter: T. Imran Alloimmunization in Patients with Haemoglobinopathies at the Thalassaemia Unit of the AHEPA University General Hospital of Thessaloniki - Presenter: G. Kaltsounis Transfusion Reactions of Patients Transfused at the Thalassaemia Unit of the AHEPA Hospital of Thessaloniki During the Two-Year Period 2015-2016 - Presenter: G. Kaltsounis Enhanced Transfusion Safety in Thalassemia-Screening for Babesia - Presenter: D. Kleinert Alloimmunisation and Autoimmunisation in Adult Transfusion Dependent Thalassaemia Patients - Presenter: P. Stark Different form of clinical presentation of H disease in a family with the same mutation - Presenter: S. Zeinali
Diagnostic & Monitoring Techniques: Genetic Modifiers of HBF and Phenotypic Severity Among Malaysian β-Thalassaemia Patients - Presenter: Z. A. Latiff Phenotype and Genotype Analysis of Alpha Thalassemia Patient with Non-deletional Mutations: Family Study from Medan, North Sumatera - Presenter: R. A. Ganie Multidisciplinary care for patients with Thalassemia Major in North-East and East region of Bulgaria - Presenter: M. Dimova Genotyping A Thalassemia Point Mutation by Probe-Gated Silica Nanoparticles - Presenter: M. Ercan A Novel, Automated, Open-source SNR-based Method to Calculate T2* Values of the Heart and Liver in Iron Overload Assessment - Presenter: J. Fernandes Contribution of NAT to Blood Safety at a University General Hospital Over One Decade - Presenter: G. Kaltsounis CMR for Myocardial Iron Overload Assessment: Calibration Curve from the MIOT Project - Presenter: L. Pistoia Importance of accessibility to MRI T2 * iron overload imaging technique for thalasseamic patients: an experience from Iran - Presenter: A. Shirkavand Unusual Fluorescein Angiography and Spectral Domain-Optical Coherence Tomography Findings in Deferoxamine Retinopathy: A Case Report - Presenter: A. Taher Iron Overload in Children with Major Thalassemia - Presenter: E. Wijaya A Unified, One-Step α- and β-Thalassemia Fast Diagnostic Method - Presenter: T. Xu Identification of a Denovo Deletion in Alpha Thalassemia; Reporting a Rare Event - Presenter: S. Zeinali Molecular PGD in Iran: Reporting experience on more than 200 blastomeres for diagnosing beta-thalassemia - Presenter: S. Zeinali A newly designed panel of 16 STR markers including the best heterozygous markers for detection of β-thalassemia and Aneuploidy screening - Presenter: S. Zeinali
Endocrine Complications: Endocrinopathies in transfusion dependent thalassemic children: Results from a single center - Presenter: M. Economou Evaluation of Pituitary Iron Overload in Patients with Transfusion Dependent Thalassemia - Presenter: Z. Karakas
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/ POSTER ABSTRACTS
Epidemiology: Pediatric Non-Malignant Blood Disorders Registry: An Epidemiological Tool to Investigate Incidence of Hemoglobinopathies in Saudi Arabia - Presenter: M. Al Saleh β-Thalassaemia Prevalence and Treatment Patterns in Italy: A Survey of Treating Physicians - Presenter: E. Angelucci The Island Factor in Genetic Responsibility: Social and Environmental Aspects of Thalassaemia in the Maldives - Presenter: E. Knoll An Islandwide Hospital Based Epidemiological Survey of Haemoglobinopathies and an Assessment of Standards of Care in 23 Centers - Presenter: A. Premawardhena Incidence of transfusion-dependent thalassemia and their hematologic profile in dr. Cipto mangunkusumo hospital Jakarta, Indonesia - Presenter: P. A. Wahidiyat
Fertility & Pregnancy: Combined Iron Chelation Therapy in β-Thalassaemia Major Patient During Pregnancy: Is it Safe? - Presenter: W. Gilbert
Gene Regulation & Therapy: Gene Therapy οf Beta Thalassemia by Lentiviral Transfer of Beta Globin Gene - Presenter: M. Abbasalipour CRISPR/CAS9 Based Genome Editing of Sickle Cell Mutation in Human Hematopoietic Stem/Progenitor Cells - Presenter: M. Karimi Targeted Deletion of BCL11A Gene by CRISPR/CAS9 System for Fetal Hemoglobin Induction in KU812 Cells - Presenter: M. Ali Khosravi Mutation-Specific Gene Correction at Clinically Relevant Efficiencies by Non-Viral Delivery and Disruption of an Aberrant Regulatory Element - Presenter: P. Papasavva
Haematopoietic Stem Cell Transplantation (HSCT): Bone marrow transplantation in patients with Thalassemia in Iran - Presenter: M. A. Tavakoli Autologous cryopreserved platelets transfusion allowing safe myeloablative allogeneic BMT in a heavily HLA-alloimmunized patient with beta-thalassemia - Presenter: F. Giglio Secondary Solid Cancer Following Hematopoietic Cell Transplantation in Patients with Thalassemia Major - Presenter: L. Pistoia
Heart & Vascular Abnormalities: Jervell and Lange-Nielsen syndrome (JLNS) is a rare, autosomal recessive disease associated with congenital sensorineural deafness, and significant QT interval prolongation - Presenter: A. Amirian NT-pro-BNP Levels in Correlation with Left Atrial Volumes in Beta-Thalassemia Patients for Early Detections of Heart Failure - Presenter: M. Dimova Significant improvement of ejection fraction with low-dose beta-blocker in an 18-year old patient with transfusion dependent Thalassaemia - Presenter: M. Dimova Lipid Profile Abnormalities in Pediatric Patients with Transfusion Dependent Thalassemia - Presenter: M. Economou
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/ POSTER ABSTRACTS
Hepatological Complications: Sofosbuvir-Containing Regimen for the Treatment of Hepatitis C Virus in Patients with Thalassemia major - Presenter: H. Dewedar Safety, efficacy and biochemical response of HCV treatment with Direct Acting Antivirals (DAAs) in 51 multitransfused patients with thalassemia major (TM) - Presenter: D. Kountouras Correlation between Transient Liver Elastography with Liver Iron Concentration and Serum Ferritin in Adult Thalassemia Intermedia Patients - Presenter: A. M. Lubis
Infections: Prevalence pattern of Hepatitis viruses among children with β-Thalassemia: Two Egyptian Centers Experiences - Presenter: L. Sherief Genitourinary Tuberculosis: A Case of Persistent Dysuria in Thalassaemia Major Patient - Presenter: W. Gilbert
Iron Overload & Management: Similar Trends in Renal Function as Measured by Serum Creatinine During Long-Term Iron Chelation Treatment with or Without Deferasirox in Patients with Transfusional Hemosiderosis - Presenter: I. Tartaglione Biodegradable Polyglycerol Based Iron Chelating System for the Treatment of Transfusional Iron Overload - Presenter: U. Abbasi Iron Chelation: Problems and Solutions from a Nursing Perspective - Presenter: S. Al Rahbi Iraqi Experience with Deferasirox in Patients with Sickle Cell/ Beta Thalassemia (HBS/ B-THAL) - Presenter: H. Al-Momen Cardiac T2* MRI Based Management of Iron Overload in Thalassemia - Presenter: S. Hussain Correlation of serum ferritin levels with hepatic MRI T2 and liver iron concentration in non-transfusion beta thalassemia intermediate patients: A contemporary issue - Presenter: M. Karimi Health Benefits of Green Tea-Curcumin Combination in β-Thalassaemia Patients - Presenter: P. Koonyosying Iron Chelators Supply in Brazil - Presenter: S. Loggetto A MRI Prospective Survey on Heart and Liver Iron and Cardiac Function in Thalassemia Major Patients Treated with Deferasirox Versus Deferiprone and Desferrioxamine in Monotherapy - Presenter: L. Pistoia Longitudinal Prospective MRI Study in Pediatric Patients with Thalassemia Major - Presenter: L. Pistoia Significant Improvement of Survival by T2* Cardiovascular Magnetic Resonance in Thalassemia Major - Presenter: L. Pistoia Association Between Cardiac Iron Clearance and Hepatic Siderosis - Presenter: L. Pistoia Low Serum Ferritin Levels Do Not Protect from Cardiac and Liver Iron in Patients with Thalassemia Major - Presenter: L. Pistoia Deferiprone Has a Dose-Dependent Effect on Liver Iron Concentration - Presenter: L. Pistoia Differential Mobilization of Transferrin and Non-Transferrin Bound Iron Fractions in Thalassaemic Serum by Iron Chelators - Presenter: S. Srichairatanakool
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/ POSTER ABSTRACTS
Poster Session II / Olympia D Hall 18th November 2017, 15.00 - 18.00 • 19th November 2017, 10.00 - 12.00 Life Style Issues: Fermented papaya and antioxidants effects - Presenter: H. R. Dehaghi Life Test - Presenter: T. Yu-Hsiang
Miscellaneous: The Brazilian Ministry of Health Technical Advisory Committee (Catthalassemia): Acting for the Benefit of People with Thalassemia - Presenter: S. de Melo Disease Knowledge: A Missing Ring in the Chain of Management of Children with Thalassemia Major Management - Presenter: N. E. Babikir Preliminary Study: Tuberculosis Infection Among Thalassemia Major Children - Presenter: L. D. Rahmartani Effect of breastfeeding versus infant formula on iron status of infants with beta thalassemia major - Presenter: U. El Safy Bone Disease in Pediatric Patients with Β-Thalassemia Major: Experience in a Tertiary Care Hospital in Upper Egypt - Presenter: M. Embaby Australia is a country built on immigration and consequently our Haematology laboratories see a diverse range of Haemoglobinopathies - Presenter: A. Gilbert Case report Co-occurrence of Hereditary elliptocytosis and Heterozygous β-Thalassemia - Presenter: H. Ibrahim Frequency of silent Brain lesions and aspirin protection evaluation over three years follow up in thalassemia patients - Presenter: M. Karimi Anthropometric Status of Thalassemia Major Patients in Dr. Cipto Mangunkusumo Hospital, Jakarta - Presenter: A. Mardhotillah MRI for the Diagnosis of Cardiac and Liver Iron Overload in Patients with Transfusion-Dependent Thalassaemia: An Algorithm to Guide Clinical Use When Availability Is Limited - Presenter: A. Taher Causes of Hospital Admission in β-Thalassemia (CHAT) in Lebanon from 1995 to 2015: a pilot retrospective study from a tertiary care center - Presenter: A. Taher Selenium level of patient with thalassemia major in dr. Cipto Mangunkusumo hospital - Presenter: T. T. Sari Quality of Life in Thalassemia Patients: A Multicenter Study - Presenter: T. T. Sari Modified Alternating Combination Iron Chelation Therapy in Thalassemia Major Patients - Presenter: P. A. Wahidiyat Assessment Towards Health Related Quality of Life in Indonesian Children with Thalassemia Major - Presenter: M. Yosia Case Series of Joint Effusion, Purpura and Gum Bleeding in beta-thalassemia Major Patient: Overlooked Effect of Scurvy? - Presenter: M. Yosia
New Advances in Treatment: An Open-Label Randomized Clinical Trial with Multiple Doses of Pegylated Bovine Carboxyhemoglobin (Sanguinatetm) in Thalassemia Patients - Presenter: K. Paiboonsukwong Production and Transduction of Human Recombinant Tat-Β-Globin Chain into K562 Model Cell System for Thalassemias - Presenter: L. Papadopoulou The use of mobile applications for distance learning in patients with Beta Thalassemia - Presenter: Z. Zahedi
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/ POSTER ABSTRACTS
Non-transfusion Dependent Thalassaemia: Effect of Hydroxyurea on Spermatogenesis in Egyptian Patients with Thalassemia Intermedia - Presenter: M. Elalfy Clinical Features and Morbidities of Hb H disease in Taiwan - Presenter: M. Y. Lu The Impact of Liver Steatosis on the Ability of Serum Ferritin Levels to Predict Liver Iron Concentration Among Non- Transfusion-Dependent Thalassaemia Patients: A Cross-Sectional Evaluation - Presenter: L. Pistoia MRI Prospective Survey on Cardiac Iron and Function and on Hepatic Iron in Non Transfusion-Dependent Thalassemia Intermedia Patients Treated with Desferrioxamine or Non Chelated - Presenter: L. Pistoia Psychometric Properties of a Patient-Reported Outcomes Symptom Measure for Patients with Non-Transfusion-Dependent Thalassaemia (NTDT-PRO©) - Presenter: A. Taher
Prevention: Thalassaemia Prevention Program in Azerbaijan (Preliminary Report) - Presenter: G. Aliyeva Role of Prenatal Diagnosis in Thalassemia Prevention-an Experience at Punjab Thalassemia Prevention Program (PTPP), Pakistan - Presenter: S. Bashir The Prevalence of Thalassemia and Inherited hemoglobin disorders in Albania (Tirana area 2015-2017) - Presenter: K. Bejko A Study of Knowledge, Attitudes and Practices Related to Thalassemia among the Palestinian University Students - Presenter: I. Inayyem Punjab Thalassaemia Prevention Programme - Presenter: H. Jafri Estimating Prevalence of Thalassemia Trait in Himachal Pradesh, India through PPS sampling of marriageable age college students - Presenter: O. Kumar Attitudes towards non-invasive prenatal diagnosis among obstetricians in Pakistan, a developing, Islamic country - Presenter: Y. Raashid Red blood cell indices and HbA2 level evaluation in parents of patients suffered from Thalassemia Major - Presenter: A.Tamaddoni Efficacy of Thalassemia and Sickle Cell Disease Prevention in Northern Greece: 15 Year Experience, Practice and Policy Gaps for Natives and Migrants - Presenter: S. Theodoridou New Challenges in the Prevention of Haemoglobinopathies Due to the Impact of Foreign-Born Residents in Cyprus - Presenter: C. Voniatis
Psycho-social Support: The Psychosocial Burden of Patients with Transfusion-dependent Beta-thalassaemia in Azerbaijan - Presenter: C. Asadov An Insight Into Psychological Disorders Related To Thalassemia: A Foresee into Future - Presenter: T. Imran Transition Readiness in Thalassemia - Presenter: M. Lahat Ad hoc informative strategies as a crucial tool to empower children affected by haemoglobinopathies involved in a multinational clinical study - Presenter: M. Lupo The Academic and Social Experiences of Students with Thalassemia in Mainstream School: A Narrative Study - Presenter: M. Natasha Psychological Support in Thalassemia - Presenter: C. Ting-Yu
17 - 19 NOVEMBER 2017 • THESSALONIKI • GREECE 31
/ POSTER ABSTRACTS
Quality of Life: Quality of Life Assessment in Thalassemia Patients and their Families Using DASS-42 - Presenter: H. Butt My Tears and Laughs Life with Thalassemia - Presenter: M. Chang Subjective Well--Being; Life Satisfaction, Happiness and Optimism of People with Thalassemia in Aceh, Indonesia - Presenter: F. Diba Questionnaire Survey on the Opinions in Marriage and Reproductive Choices of People with Transfusion Dependent Thalassemia - Presenter: S. Hosoya The Effects of Thalassemia Patients’ Self-Monitoring and Management of Health - Presenter: H. Huang Comparison of Quality of Life in Patients With β-Thalassemia Intermedia And β-Thalassemia Major In Southern Iran - Presenter: M. Karimi Necessity of Introducing a Thalassemia Team for Better Treatment of Thalassemia Major Patients in Emergency Unit - Presenter: S. Taherizadeh Efficacy of Sports Therapy for Improving Thalassemia Major Patients’ Quality of Life - Presenter: S. Taherizadeh OUR CURE HOME! Presenter: M. Bayat Quality of Life (QoL) Survey- United Kingdom Thalassaemia Society - Presenter: M. Petrou
Sickle Cell Disease: Role of Natural Killer Cells and Interferon-Gamma in Children and Adolescents with Sickle Cell Disease - Presenter: A. Adly CD4+CD28null T Lymphocytes in Paediatric Patients with Sickle Cell Disease - Presenter: A. Adly Spectrum of Clinical and Radiological Features in Sickle Cell Disease Patients with Acute Chest Syndrome - Presenter: S. Al Kindi Clinical and Laboratory Features of Respiratory Viral Infections in Sickle Cell Disease Patients, with Particular Emphasis on H1N1 - Presenter: S. Al Kindi Impact of Hydroxyurea on Splenic Function in Young Patients with Sickle Cell Disease - Presenter: M. Economou Effect of Hydroxyurea on Coagulation Parameters in Young Patients with Sickle Cell Disease - Presenter: M. Economou The bamboozling HbS … a case of transfusion-acquired hemoglobinopathy - Presenter: H. Ibrahim Catalonia Newborn Screening Program. Prevalence of Sickle Cell Disease - Presenter: JL Marin Sickle Cell Disease in the Danish Immigrant Population: a Prevalence Study - Presenter: A. Nardo-Marino Milestones Along My Personal Journey with Hydroxyurea - Presenter: A. S. Shakir Sickle Cell and Exchange Blood Transfusions in the Paediatric Realm - Presenter: A. Woods
α-thalassaemia syndromes: Hb Aghia Sophia in Northern Greece - Presenter: D. A. Giannakopoulou Management of Haemoglobin Barts Hydrops Fetalis Syndrome with Exchange Transfusions - Presenter: J. Ong
14TH INTERNATIONAL CONFERENCE ON THALASSAEMIA AND OTHER HAEMOGLOBINOPATHIES & THE 16TH TIF CONFERENCE FOR PATIENTS AND PARENTS
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Below you will find the suggested city walks and tours, specially designed and planned in the framework of the 14th International Conference on Thalassaemia and Other Haemoglobinopathies & 16th TIF Conference for Patients and Parents, to enhance your stay in Thessaloniki and the region, and to experience the cultural identity of the destination.
NOTE: all below mentioned tours are designed by SYMVOLI Conference & Cultural Management, and implemented by experienced professional tour guides.
FOR MORE INFORMATION & TO REGISTER, PLEASE CONTACT US AT THE CONFERENCE SECRETARIAT
The Kaleidoscope Tour Exploring the many colors and images, many stories of Thessaloniki
DATE & TIME: THURSDAY 16th NOVEMBER | 18:00-20:00 DURATION & CONTENT: 2h walking city tour, presenting all historical eras of Thessaloniki and distinctive monuments COST €15,00 / pp (a minimum of 20 participants is required)
Welcome city tour Thessaloniki at a glance
DATE & TIME: FRIDAY 17th NOVEMBER | 10:00-13:00 DURATION & CONTENT: 3h city tour by bus, to get a glimpse of the city, its great landmarks and most significant monuments, and enjoy a panoramic view from the city walls. COST €25,00 / pp (coach bus transportation included / a minimum of 20 participants is required) 33
Winery visit A local tradition, a pleasure worldwide
DATE & TIME: SUNDAY 19th NOVEMBER | 15:00-18:00 DURATION & CONTENT: 2h winery visit, acquaint yourself with the exquisite Greek wines and their history COST €35,00 / pp (includes: coach bus transportation - 5 different wines & assorted local cheese tasting / a minimum of 20 participant is required)
Vergina & winery visit The royal tombs of Ancient Macedonia, the kingdom of Alexander the Great
DATE & TIME: SATURDAY 18th NOVEMBER | 10:00-18:00 DURATION & CONTENT: 8-9h tour including a visit to the Royal Tomb of Alexander the Great’s father & a winery visit COST €75,00 / pp (includes entrance fees to museum - wine tasting & light lunch / a minimum of 25 participant is required) *this tour is planned for accompanying people
Dion - Mount Olympus: The sacred city in the foothills of Olympus, the Mountain of the Gods & Muses
DATE & TIME: SATURDAY 18th NOVEMBER | 10:00-18:00 DURATION & CONTENT: 6-8h tour, including a visit to the archaeological site of Dion, a visit to the picturesque village of Palaios Panteleimonas and Enipeas Gorge at Mount Olympus COST €60,00 / pp (includes entrance fees to museum - lunch / a minimum of 25 participant is required) *this tour is planned for accompanying people 34 Side Meetings
Friday 17th November 2017 09.00 - 13.00 Kallipateira Meeting Room Addressing Unsafe MRI Iron Monitoring in Developing Countries Organiser: Thalassaemia International Federation
13.00 - 15.00 Kallipateira Meeting Room Kick - Off Collaboration Meeting: TIF - EASL International Liver Foundation Organiser: Thalassaemia International Federation
Saturday 18th November 2017 13.00 - 14.00 Ilida Meeting Room Bio-Rad Corporate Luncheon (by invitation only) A conversation on the edge of innovation: New tools to make better decisions Organiser: Bio-Rad Laboratories Inc.
Sunday 19th November 2017 13.30 - 15.00 Voula Patoulidou Hall Kick-Off Meeting for the Development of a Haemoglobinopathy e-registry Organiser: Thalassaemia International Federation
14.00 - 15.00 Kallipateira Meeting Room Belt and Road Thalassemia Alliance Organiser: Beijing Angel Mom Charity Foundation/ China Thalassaemia Alliance
14.00 - 16.30 Ilida Meeting Room The Global Globin 2020 Challenge - Towards Comprehensive Global Epidemiology and Prevention
Organizer: Human Variome Project - Global Globin 2020 Challenge Executive Committee
16.30 -18.00 Ilida Meeting Room GG2020 Executive Committee Meeting
Organizer: Human Variome Project - Global Globin 2020 Challenge Executive Committee
17 - 19 NOVEMBER 2017 • THESSALONIKI • GREECE 35 Supporters
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Exhibitors
14TH INTERNATIONAL CONFERENCE ON THALASSAEMIA AND OTHER HAEMOGLOBINOPATHIES & THE 16TH TIF CONFERENCE FOR PATIENTS AND PARENTS Organized by
In collaboration with
With the support of
Hellenic Society of Haematology Greek Thalassaemia Association
Under the auspices of
Hellenic Ministry of Health