EURORDIS Summer School Alumni (2008-2014) (to access the complete list of EURORDIS members – follow this link www.eurordis.org/membership)
First Name Last Name Association Year
Armenia
Albert Matevosyan Neurohereditary diseases - Charity Association 2008/2010 Austria
Rainer Reidl DEBRA Austria/ DEBRA International Pro-Rare Austria 2012 Ulrike Holzer Selbsthilfe Gruppe Ektodermale Dysplasie EV 2014 Barbara Dissauer DEBRA Austria 2013 Belgium
Yvonne Jousten Association Belge du Syndrome de Marfan (ABSM) 2008 Greetje Goossens Belgian Myeloma Patient Organisation 2008 Lutgarde De Baere Belgian Organisation for Metabolic Diseases (BOKS) 2008/2010 Ingrid Jageneau DEBRA Belgium 2011 Roberta Savli European Federation of Allergy and Airways Diseases 2013 Flaminia Macchia EURORDIS 2012 Luc Matthysen HTAP Belgique Asbl 2013 Jonathan Ventura RaDiOrg 2012 Bulgaria
Lyubomir Naydenov Bulgarian Society of Patients with Pulmonary Hypertension 2013 Vladimir Tomov National Alliance of People with Rare Diseases 2011 Ivan Ivanov Thalassaemics' Organaisation in Bulgaria 2011 Canada
Durhane Wong-Rieger Canadian Organisation for Rare Diseases 2009/2010 Yolaine Dupont PVNH Support and Awareness 2013 Croatia
Vlasta Zmazek Croatian Epidermolysis Bullosa Association 2008/2010 Czech Republic
Jan Mihule Czech Cystic Fibrosis Association 2011 Jana Dvorackova Czech Haemophilia organisation 2011 Jiri Hruda Czech Huntington Association 2011 Vladimir Dolejs Czech Society of Haemophilia 2008 Ivo Dostal Klub Nemocnych Cystichou Fibrozou 2014 Denmark
Annelise Roennow Federation European Scleroderma Association 2013 Dorthe Lykke Foreningen for Ataksi/HSP 2011
www.eurordis.org EURORDIS Summer School Alumni Page 1 of 7 Stephanie Joker Neilsen Rare Disorder Denmark 2014 Estonia
Reet Paloson Prader Willi Association of Estonia 2013 Pille-Katrin Levin Union of Estonian Multiple Sclerosis Societies 2013 Finland
Anna Meriluoto Fabry Internation Network, Finnish Fabry Association 2011 France
Olivia Niclas AFDE - Dysplasies Ectodermiques 2009 Daniel Renault AIRG France FEDERG 2013 Francoise Germain Association Huntington France 2011 Katharine Foda Association for Parents of Children with Cancer (ISIS) 2008 Sylvie Genet Association Francaise contre les Myopathies 2012 Alain Weill Association Francaise des Hemophiles 2009 Thomas Sannié Association Française des Hémophiles (AFH) 2008 Philip Bloom Association Francaise des Malades de Myeloma Multiple (AF3M) 2012 Anne Hugon Association Francophone des glycogenoses 2013 Marie-Odile Perrousseaux Association Huntington France 2009/2010 Corinne Fourrier Association Nationale du Syndrome X-fragile "Le Goeland" 2009/2010 Jacques Walch Association Pemphigus - Pemphigoide France 2009 Christian Seguin Association pour les syringomyelique Europeen Reunis (APAISER) 2009 Zoe Alahouzou EURORDIS 2013 Sharon Ashton EURORDIS 2011 Anne-Mary Bodin EURORDIS 2011 Jill Bonjean EURORDIS 2011 Denis Costello EURORDIS 2009 Monica Ensini EURORDIS 2013 Nancy Hamilton EURORDIS 2012 Anna Kole EURORDIS 2009 Shane Lynam EURORDIS 2009 Christel Nourissier EURORDIS 2008 Patrice Régnier EURORDIS 2009 Juliette Senecat EURORDIS 2013 Ariane Weinman EURORDIS 2008 Claudie Baleydier French Association against Friedrich Ataxia (AFAF) 2008/2010 Martine Pergent IPOPI - Primary Immunodeficiencies 2009 Rachel Hansen Prader-Willi France 2012 Gerard Nguyen Rett Syndrome Europe 2008/2010 Karen Aiach Sanfillipo 2009 Mathieu Boudes EURORDIS 2014 Guy Bouguet Lymphome Espoir 2014 Marcelle Bousbaci Association HNPCC Syndrome de Lynch 2014 Raquel Castro EURORDIS 2014 Olivia Romero Lux Association Française des hémophiles 2014 Tania Webster EURORDIS 2014
www.eurordis.org EURORDIS Summer School Alumni Page 2 of 7 Georgia
Oleg Kvlividze Georgian Foundation for Genetic and Rare Diseases 2011 Ketevan Saralidze Georgian Foundation for Genetic and Rare Diseases 2013 Germany
Arnd Brauer Alliance for Chronic Rare Diseases ACHSE 2008 Lisa Kotschi Arbeitsgemeinschaft Plasmozytom/Multiple Myeloma 2012 Holger Roloff Deutche Narkolepsie-Gesellschaft 2012 Bernd Quadder Deutsche Sarkoidose 2008/2010 Guenter Eibel Gaucher Gesellschaft Deutschland 2009/2010 Alexander Exner German federal association of vascular birth deformities 2013 Mirjam Mann German National Alliance (ACHSE) 2011 Natascha Kolland I.E.B. Debra Deutschland 2012 Markus Georg Pro Retina Dutschland 2012 Rainald Von Gizycki Retina Europe/Pro Retina 2008 Inge Schwersenz Spinal Muscular Atrophy (SMA) within DGM 2009 Marek Parowicz Polish Alternating Haemiglegia in Children 2013 Helma Gusseck Pro Retina Deutschland 2013 Nicola De Nittis Deutsches Thalassamei Forum 2014 Norbert Eckelmann Selbsthilfegruppe Glykogenose Germany 2014 Michael Längsfeld Pro Retina Deutschland ev 2014 Steffen Suchert Faun Stiftung 2014 Greece
Stamatina Manolias Association of people with Genetic disorders 2008 Dimitris Athanasiou Muscular Dystrophy Association Hellas 2014 Hungary
Beata Barna HUFERDIS - and Williams Syndrome Association 2009 Danijela Szili Hungarian Federation of Rare Diseases (HUFERDIS) 2011 Borbala Keszthelyi Hungarian Haemophilia Society 2011 Gabor Varga Hungarian Haemophilia Society 2009/2010 Gabor Pogany Rare Diseases Hungary (HUFERDIS) 2008/2010 Dragomir Slavev Thalassaemics' Organaisation in Bulgaria 2011 Gergely Meszaros Tudoer Egylet PHA Hungary 2014 Iceland
Sigurdur Johannesson Alternating Hemiplegia association of Iceland (AHCAI) 2012 Gudrun Ruth Vidarsdottir Hypoparathyroidism Europe 2008 Fridrik Fridriksson Unique Children 2014 Bryndis Maria Leifsdottir Gudrun’s Rett Syndrome Research Fund 2014 Ireland
Larry Warren Alfa Europe and Alpha One Foundation (Ireland) 2008 Ann Kennedy Federation of European Scleroderma Associations 2011 Maria Panza Irish Fragile X Society 2014 Italy
Agnese Bonfiglio A.Ma.Po Acute and non-acute porphyrias 2012
www.eurordis.org EURORDIS Summer School Alumni Page 3 of 7 Antonella Esposito Angeli Noonan Italian Association for Noonan Syndrome 2009 Andrea Gressani Associazione Immunodeficienze Primitive ONLUS 2011 Edward Callus Associazione Italiana dei Cardiopatici Congeniti Adulti (AICCA) 2012 Lucia Bartoloni Associazione Italiana Kartagener 2008 Maria Daniela Corvo Associazione Italiana Sindrome e Malattia de Behçet (SIMBA) 2008 Carla Fladrowski Associazione Sclerosi Tuberosa (AST Onlus) 2009/2010 Antonella Cravero Associazione Sclerosi Tuberosa (AST) 2011 Michele Lipucci di Paola Associazione Veneta Lotta Talassemia (AVLT) 2008/2010 Paola Zinzi European Huntington Association 2011 Antonella Celano Peoples Association with rheumatic diseases (APMAR) 2012 Ouarda Fareh SIMBA (Behcet) 2009 Diana Vitali SOD Italia 2012 Marzia Abenante Tuberous Sclerosis Italian Association 2012 Simona Bellagambi UNIAMO 2011 Flavio Minelli Unione Italiana Ittiosi (UNITI) 2008 Elisabetta Gecchele Acondroplasia Insieme per Crescere Onlus 2013 Sara Carrabba Aisac Onlus 2014 Claudia Crocione HHT Onlus Teleagiectasie Emorragica Ereditria 2014 Lithuania
Vida Augustiniene Lithuanian Diabetes Association 2012 Aldona Droseikiene Lithuanian Multiple Sclerosis Union 2013 Malta
Antoinette Attard Breast Care Support Group Europa Donna 2012 Netherlands
Van Poelgeest- ICP Netherlands Interstitial Cystitis/ Painful bladder sydrome, Mary Lynne 2013 Pomfret chronic pelvic pain Balthasar Schaap ADCA vereniging Nederland Euro-ataxia, EFNA 2011 Elja van der Veer Association for Muscle Diseases Netherlands 2011 Margreet Jonker Breast Cancer Society 2012 Manon Bosch Dutch Association for Addison and Cushing patients 2013 Marieke Mol Coeliac Association 2012 Eglantine Barents Diabetesvereniging Nederland 2012 Patrick Heijne Dutch Association for Addison and Cushing patients 2011 Ellen Van Veldhuizen Dutch Association for Addison and Cushing patients 2009/2010 Marieke Van Meel European Care for Nephrotic Syndrome 2011 Kim Wever European Genetic Alliance 2012 Erica Schenk Fabry International Network 2009/2010 Peter Verhoeven Friedrich Wegener Stichtin 2012 Brigitte Bosman Lung cancer Netherlands 2012 Henk-Willem Laan Marshall Smith Syndrome Research Foundation 2011 Carmen Kleinegris NET groep Foundation 2013 Miranda Anke Lanser Spierziekten Nederland VSN 2013 Leo Andeweg St. Klankboard 2012 Anke Groenen Dutch Association for neuromuscular diseases 2014 www.eurordis.org EURORDIS Summer School Alumni Page 4 of 7 Chinar Rahmattulla Vasculitis Foundation 2014 Elisabeth Vroom Duchenne Parent Project 2014 Poland
Katarzyna Jesionkowska Child's Heart Foundation 2011 Joanna Jesionkowska Dina Radziwillowa Child's Heart Foundation 2010 Hanna Milczarek Dina Radziwillowa Child's Heart Foundation 2009 Joanna Swacha Foundation UMIEC POAMAGAC - Mucopolysaccharoidoses 2012 Portugal
Raquel Silva Associacao Portuguesa de Leucemias e Linfoma 2011 Joao Salazar EMP- European Myeloma Platform 2009 Isabel Sebastiao-Vieira Rarssimas Associacao nacional de deficiecias mentais eraras 2014 Romania
Costin Radu Ganescu Asociatia Persoanelor cu Thalasemie Majora 2011 Camelia Lazar Assocation Williams Syndrome Romania 2009/2010 Sorin Gradinaru My Child My Heart Association (ACMIM) 2012 Mihaela Despa Myelom Euronet Romania 2009/2010 Etelka Czondi Romanian Prader Willi Association (APWR) 2008 Dorica Dan Romanian National Alliance for Rare Diseases 2014 Romanian Association of IPOPI International Patient Organisation Adina Elena Stanciu 2014 for Primary Immunodeficiencies (Primary Immunodeficiency) Russia
Irina Myasnikova Help to Cystic Fibrosis patients 2011 Liana Murtazina Association for assistance to Rett Syndrome Patients 2013 Serbia
International Patients Organisation for Primary Dragana Koruga 2011 Immunodeficiencies National Association of Childhood Cancer Parent Organizations of Irina Cepinac-Ban 2008 Serbia (NURDOR) Davor Duboka National Organisation for Rare Diseases Serbia 2014 Association for help and support of people with Hunter Syndrome Marija Joldic 2014 MPS II in Serbia Bojana Mirosavljevic LIFE association against rare diseases of childhood 2014 Slovakia
Katarina Stepankova Slovak Cystic Fibrosis Association 2009/2010 Kristina Ficeriova Debra Slovakia 2014 South Africa
Joy Rosario Primary Immunodeficiency Network of South Africa (PiNSA) 2012 Spain
Gema Chicano Saura Asociacion de Afectados por Displasia Ectodermica (AADE) 2012 Manuel Armayones Ruiz Asociacion Espanola de Sindrome de Lowe 2012 Vanessa dos Reis Ferreira Asociacion Espanola Sindrome CDG 2011 Juan Fuertes Guillen Asociacion Nacional de Hipertension Pulmonar 2011 Sara Perez Martinez Asociacion Nacional Sindrome de Apert 2008/2010 Evanina de Morcillo Associacion de Epidermolisis Bullosa de España 2008 www.eurordis.org EURORDIS Summer School Alumni Page 5 of 7 Makow Luisa Basset Federacion Española de padres de niños con cancer (FEPNC) 2008 Miriam Selles Fundacio catalana d'Esclerosi Lateral Amiotrofica 2011 Maria Escudero Fundacion Menudos Corazones 2009/2010 Montse Mireles Fundacion Menudos Corazones 2009/2010 Sandra Pereira Pinto Spanish Association of CDG Sindrom (AESCDG) 2012 Jordi Cruz Spanish MPS Society 2012 Begonya Nafria Escalera Asociacion espanola de sindrome de Lowe 2013 Julian Isla Gomez Dravet Syndrome Foundation 2013 Fernandez Isabel Spanish Federation of rare diseases 2013 Aldeguer Aldeanueva Gonzalo Behcets disease Spain 2014 Serrano Xochitl Alvarez Rodriguez D'Genes - Rare diseases 2014 Guadelupe Desch Roberto Martin Spanish association of pulmonary hypertension 2014 Francesc Solano Association Espanola de Enfermos de Glucogenosis 2014 Cayuela Sweden
Orica Lundgren Agrenska - National Centre of Rare Diseases 2008 Lise Murphy Marfan Syndrome 2009/2010 Cecilia Bjargo Prader-Willi Syndrome Association in Sweden 2009/2010 Maria Michelfelder Primary Immunodeficiency Organisations 2013 Maria Gardsater Rare Diseases Sweden 2009 Nanda Holm Rare Diseases Sweden 2011 Britta Berglund Swedish Ehlers Danlos Syndrome Association 2009/2010 Switzerland
Peter Lack Childhood Cancer Foundation Basel 2013 Ukraine
Andriy Shatillo Children with Spinal Muscular Atrophy 2011 Vitaliy Matyushenko Kharkiv Charitable Foundation 2012 Association of handicapped children with progressing muscular and Oksana Chalenko 2013 neuromuscular diseases. Inna Krulko Ukranian Union of Patients Organisations 2013 United Kingdom
Glenn Irvine Advocacy for Neuroacanthocytosis Patients 2011 Hana Ayoob Alkaptonuria (AKU) Society 2013 Nick Sireau AKU Society 2011 Oliver Timmis AKU Society 2012 Kay Parkinson Alstrom Syndrome (UK) 2011 Kerry Leeson-Beevers Alstrom Syndrome UK 2008/2010 John Gurhy Ataxia UK 2009 Laura Rooke Ataxia UK 2008 Anisha Zaman Behcets Sydnrome Society 2013 Aaron McPeake Behcets Syndrome Society 2009/2010
www.eurordis.org EURORDIS Summer School Alumni Page 6 of 7 Bonnie McKerracher Chromosome 18 Registry and Research Society 2013 Lesley Greene Cystinosis and Metabolic Disorders 2009/2010 John Dart DEBRA International and DebRA UK 2009/2010 Ann Hale Global Organisation for Lysosomal Diseases (GOLD) 2008 International Patient Organisation for Primary Immunodeficiencies Jose Drabwell 2008 (IPOPI) Rose Woodward Kidney Cancer Support Network and Rarer Cancers Foundation 2012 Jill Prawer Lipoprotein Lipase Deficiency 2013 Carole Trowbridge Myasthenia gravis association 2011 Tess Harris PKD Charity 2013 Catherine Burgess Pseudomyxoma Survivor 2012 Russell Wheeler Rare Disease UK 2012 Oli Rayner Spit it out Cystic Fibrosis 2013 Sally Hicks The Fragile X Society 2009 Lynne Zwink The Fragile X Society 2010 Richard West UK Behcets Syndrome Society 2008/2010 Christos Sotirelis UK Thalassaemia Society 2009/2010 Roanna Maharaj UK Thalasssemia Society 2013 Alexandra Johnson Joining Jack 2014 Carmen Lavin Myasthernia Gravis Association 2014 Chris Philips Behcets Sydnrome Society 2014
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