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