EURORDIS SUMMER SCHOOL ALUMNI 2008 TO 2015 BY COUNTRY For the the complete list of EURORDIS members: www.eurordis.org/membership Name Last name Association Year Armenia Albert Matevosyan "Neuroheditary diseases" Charity Association 2008/2010 Austria Ulrike Holzer Selbsthilfe Gruppe Ektodermale Dysplasie EV 2014 Rainer Riedl DEBRA Austria/ DEBRA International Pro Rare Austria 2012 Claas Röhl NF Kinder 2015 Barbara Dissauer DEBRA Austria 2013 Belgium Lutgarde De Baere Belgian Organisation for Metabolic Diseases (BOKS) 2008/2010 Greetje Goossens Belgian Myeloma Patient Organisation 2008 Ingrid Jageneau DEBRA Belgium 2011 Yvonne Jousten Association Belge du Syndrome de Marfan (ABSM) 2008 Flaminia Macchia EURORDIS 2012 Luc Matthysen HTAP Belgique Asbl 2013 Roberta Savli European Federation of Allergy and Airways Diseases 2013 Patients Org Jonathan Ventura RaDiOrg 2012 Bulgaria Ivan Ivanov Thalassaemics Organisation in Bulgaria 2011 Lyubomir Naydenov Bulgarian Society of Patients with Pulmonary Hypertension 2013 Vladimir Tomov National Alliance of People with Rare Diseases 2011 Canada Yolaine Dupont PVNH Support and Awareness 2013 Durhane Wong-Rieger Canadian Organisation for Rare Diseases 2009/2010 China Xun JI Chinese Organisation for Rare Disorders 2015 Croatia Vlasta Zmazek Croatian Epidermolysis Bullosa Association 2008/2010 Anja Kladar Croatian Alliance for Rare Diseases 2015 Czech Republic Anna Arellanesova Czech Association for Rare Diseases 2015 Vladimir Dolejs Czech Society of Haemophilia 2008 Ivo Dostal Klub Nemocnych Cystichou Fibrozou 2014 Jana Dvorackova Czech Haemophilia organisation 2011 Jiri Hruda Czech Huntington Association 2011 Jan Mihule Czech CF Association 2011 Anastassiya Zidkova Czech Society of Haemophilia 2015 Denmark Stephanie Joker Neilsen Rare Disorder Denmark 2014 Anne-Grethe Lauridsen European Gaucher Disease 2015 Dorthe Lykke Foreningen for Ataksi/HSP 2011 Annelise Roennow Fed European Scleroderma Association 2013 Estonia Pille-Katrin Levin Union of Estonian MS Societies 2013 Reet Paloson Prader Willi Assoc of Estonia 2013 Finland Anna Meriluoto Fabry Internation Network, Finnish Fabry Association 2011 France Karen Aiach Sanfillipo 2009 Zoe Alahouzou EURORDIS 2013 Sharon Ashton EURORDIS 2011 Claudie Baleydier French Association against Friedrich Ataxia (AFAF) 2008/2010 Philip Bloom Association Française des Malades de Myeloma Multiple 2012 Anne-Mary Bodin EURORDIS 2011 Jill Bonjean EURORDIS 2011 Lara Chappell EURORDIS 2015 Denis Costello EURORDIS 2009 Monica Ensini EURORDIS 2013 Katharine Foda Association for Parents of Children with Cancer (ISIS) 2008 Corinne Fourrier Association Nationale du Syndrome Xfragile "Le Goeland" 2009/2010 Sylvie Genet Association Française contre les Myopathies 2012 Francoise Germain Association Huntington France 2011 Rachel Hansen Prader-Willi France 2012 Anne Hugon Association Francophone des glycogenoses 2013 Anna Kole EURORDIS 2009 Shane Lynam EURORDIS 2009 Gerard Nguyen Rett Syndrome Europe 2008/2010 Olivia Niclas AFDE - Dysplasies Ectodermiques 2009 Christel Nourissier EURORDIS 2008 Martine Pergent IPOPI - Primary Immunodeficiencies 2009 Marie-Odile Perrousseaux Association Huntington France 2009/2010 Patrice Régnier EURORDIS 2009 Daniel Renault AIRG France FEDERG 2013 Thomas Sannié Association Française des Hémophiles (AFH) 2008 Christian Seguin Association pour aider et informer les syringomyelique 2009 Europeen Reunis (APAISER) Juliette Senecat EURORDIS 2013 Jacques Walch Association Pemphigus - Pemphigoide France 2009 Alain Weill Association Francaise des Hemophiles 2009 Ariane Weinman EURORDIS 2008 Lenja Wiehe EURORDIS 2015 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 Georgia Oleg Kvlividze Georgian Foundation for Genetic and Rare Diseases 2011 Lali Margvelashvili Society of Parents and Children with JIA (member of 2015 GERAD) Ketevan Saralidze Georgian Foundation of Genetic and Rare Diseases 2013 Germany Arnd Brauer Alliance for Chronic Rare Diseases ACHSE 2008 Guenter Eibel Gaucher Gesellschaft Deutschland 2009/2010 Alexander Exner German federal association of vascuular birth deformities 2013 Markus Georg Pro Retina Dutschland 2012 Natascha Kolland I.E.B. Debra Deutschland 2012 Lisa Kotschi Arbeitsgemeinschaft Plasmozytom/Multiples Myelom 2012 Mirjam Mann German National Alliance (ACHSE) 2011 Bernd Quadder Deutsche Sarkoidose 2008/2010 Holger Roloff Deutche Narkolepsie-Gesellschaft 2012 Inge Schwersenz Spinal Muscular Atrophy (SMA) within DGM 2009 Rainald Von Gizycki Retina Europe/Pro Retina 2008 Anke Widenmann-Grolig KEKS e. V and EAT e.V. 2015

Nicola de Nittis Deutsches Thalassamei Forum 2014 Norbert Eckelmann Selbsthilfegruppe Glykogenose Germany 2014 Christina Grabowski Morbus Osler Selbsthilfe e.V. 2015 Jasjote Grewal CELLS - Centre for Ethics and Law in the Life Sciences 2015 Helma Gusseck Pro Retina Dutschland 2013 Michael Längsfeld Pro Retina Deutschland ev 2014 Michael Oeschger Skleroderma Selbsthilfe e.V. 2015 Marek Parowicz Polish Alternating Haemiglegia in Children 2013 Steffen Suchert Faun Stiftung 2014 Greece Dimitris Athanasiou MDA Hella 2014 Stamatina Manolias Association of people with Genetic disorders 2008 Hungary Beata Barna HUFERDIS - and Williams Syndrome Association 2009 Borbala Keszthelyi Hungarian Haemophilia Society 2011 Gabor Pogany Rare Diseases Hungary (HUFERDIS) 2008/2010 Dragomir Slavev Thalassaemics' Organaisation in Bulgaria 2011 Danijela Szili Hungarian Federation of Rare Diseases 2011 Gabor Varga Hungarian Haemophilia Society 2009/2010 Gergely Meszaros Tudoer Egylet PHA Hungary 2014 Iceland Fridrik Fridriksson Unique Children 2014 Sigurdur Johannesson Alternating Hemiplegia association of Iceland (AHCAI) 2012 Bryndis Maria Leifsdottir Unique Children 2014 Gudrun Ruth Vidarsdottir Hypoparathyroidism Europe 2008 Ireland Ann Kennedy Federation of European Scleroderma Associations 2011 Maria Panza Irish Fragile X Society 2014 Larry Warren Alfa Europe and Alpha One Foundation (Ireland) 2008 Avril Daly Genetic Rare Disorders Organisation 2015 Italy Marzia Abenante Tuberous Sclerosis Italian Association 2012 Lucia Bartoloni Associazione Italiana Kartagener 2008 Simona Bellagambi UNIAMO 2011 Agnese Bonfiglio A.Ma.Po 2012 Edward Callus Associazione Italiana dei Cardiopatici Congeniti Adulti 2012 (AICCA) Antonella Celano People Assocation with rheumatic diseases (APMAR) 2012 Maria Daniela Corvo Associazione Italiana Sindrome e Malattia de Behçet 2008 (SIMBA) Antonella Cravero Associazione Sclerosi Tuberous (AST) 2011 Antonella Esposito Angeli Noonan Italian Association for Noonan Syndrome 2009 Ouarda Fareh SIMBA (Behcet) 2009 Carla Fladrowski Associazione Sclerosi Tuberosa (AST Onlus) 2009/2010 Andrea Gressani Associazione Immunodeficienze Primitive ONLUS 2011 Michele Lipucci di Paola Associazione Veneta Lotta Talassemia (AVLT) 2008/2010 Flavio Minelli Unione Italiana Ittiosi (UNITI) 2008 Diana Vitali SOD Italia 2012 Paola Zinzi European Huntington Association 2011 Renza Barbon UNIAMO 2015 Sara Carrabba Aisac Onlus 2014 Claudia Crocione HHT Onlus Teleagiectasie Emorragica Ereditria 2014 Elisabetta Fortunati 2015 Elisabetta Gecchele Acondroplasia Insieme per Crescere Onlus 2013 Mario Ricciardi Cystic Fibrosis Europe 2015 Latvia Ieva Plume PHA Latvia 2015 Lithuania Vida Augustiniene Lithuanian Diabetes Association 2012 Aldona Droseikiene Lithuanian Multiple Schlerosis Union 2013 Anastasija Kovaliova Plautine hipertenzija 2015 Malta Antoinette Attard Breast Care Support Group Europa Donna 2012 Netherland s Leo Andeweg St. Klankboard 2012 Eglantine Barents Diabetesvereniging Nederland 2012 Manon Bosch Byniervereniging NVACP 2013 Brigitte Bosman Lung cancer Netherlands 2012 Anke Groenen Dutch Association for neuromuscular diseases 2014 Patrick Heijne Dutch Association for Addison and Cushing 2011 Margreet Jonker Breast Cancer Society 2012 Carmen Miranda Kleinegris NET groep Foundation 2013 Henk-Willem Laan Marshall Smith Syndrome Research Foundation 2011 Anke Lanser Spierziekten Nederland VSN 2013 Melanie Meniar European Waldenström's Macroglobulinemia Network 2015 Marieke Mol Coeliac Association 2012 Chinar Rahmattulla Vasculitis Foundation 2014 Balthasar Schaap ADCA vereniging Nederland Euro-ataxia, EFNA 2011 Erica Schenk Fabry International Network 2009/2010 Elja van der Veer Association for Muscle Diseases Netherlands 2011 Marieke Van Meel European Care for Nephrotic Syndrome 2011 Mary Lynne Van Poelgeest- ICP Netherlands Interstitial Cystitis/ Painful bladder 2013 Pomfret syndrome, chronic pelvic pain Ellen Van Veldhuizen Dutch Federation for Addison and Cushing patients 2009/2010 Peter Verhoeven Friedrich Wegener Stichtin 2012 Elizabeth Vroom Duchenne Parent Project 2014 Rob Collin Radboudumc 2015 Lesnik Oberstein LUMC Netherlands 2015 Norway Ingunn Westerheim Norwegian Association for Osteogenesis 2015 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 - Mucopolysaccharoidosis 2012 (all types) Portugal Joao Salazar EMP- European Myeloma Platform 2009 Raquel Silva Associacao Portuguesa de Leucemias e Linfoma 2011 Micaela Rosenberg European Tuberous Sclerosis Association 2015 Isabel Sebastiao-Vieira Rarssimas Associacao nacional de deficiecias mentais 2014 eraras Romania Etelka Czondi Romanian Prader Willi Association (APWR) 2008 Mihaela Despa Myelom Euronet Romania 2009/2010 Costin Radu Ganescu Asociatia Persoanelor cu Thalasemie Majora 2011 Sorin Gradinaru My Child My Heart Association (ACMIM) 2012 Camelia Lazar Assocation Williams Syndrome Romania 2009/2010 Dorica Dan Romanian Association for PID patients 2014 Adina Elena Stanciu Romanian Association for PID patients 2014 Russia Irina Myasnikova Help to CF patients 2011 Liana Murtazina Association for assistance to Rett Syndrome Patients 2013 Serbia Irina Cepinac-Ban National Association of Childhood Cancer Parent 2008 Organizations of Serbia (NURDOR) Dragana Koruga International Patients Organisation for Primary 2011 Immunodeficiencies Davor Duboka National Organisation for Rare Diseases Serbia 2014 Jovana Jasnic Savovic Institute for Molecular Genetics and Genetic Engineering 2015

Marija Joldic Association for help and support of people with Hunter 2014 Syndrome MPS II in Serbia" Bojana Mirosavljevic LIFE association against child rare disease 2014 Sandra Pavlovic National Organisation for Rare Diseases Serbia 2015 Slovenia Kristina Ficeriova Debra Slovakia 2014 Katarina Stepankova Slovak Cystic Fibrosis Association 2009/2010 Špela Sonjak Society for patients with Fabry disease 2015 South JoyAfrica Rosario Primary Immunodeficiency Network of South Africa 2012 (PiNSA) Spain Manuel Armayones Ruiz Asociacion Espanola de Sindrome de Lowe 2012 Luisa Basset Federacion Española de padres de niños con cancer 2008 (FEPNC) Gema Chicano Saura Asociacion de Afectados por Displasia Ectodermica (AADE) 2012

Jordi Cruz Spanish MPS Society 2012 Evanina de Morcillo Makow Asociacion de Epidermolisis Bullosa de España 2008

Vanessa dos Reis Ferreira Asociacion Espanola Sindrome CDG 2011 Maria Escudero Fundacion Menudos Corazones 2009/2010 Juan Fuertes Guillen Asociacion Nacional de Hipertension Pulmonar 2011 Montse Mireles Fundacion Menudos Corazones 2009/2010 Sandra Pereira Pinto Spanish Association of CDG Sindrom (AESCDG) 2012 Sara Perez Martinez Asociacion Nacional Sindrome de Apert 2008/2010 Miriam Selles Fundacio catalana d'Esclerosi Lateral Amiotrofica 2011 Gonzalo Aldeanueva Behcets disease Spain 2014 Serrano Xochitl Alvarez Rodriguez D'Genes 2014 Guadelupe Desch Alba Ancochea Feder 2015 Ignacio Blanco Guillermo Instituto Catalonian National Cancer Institute 2015 Isabel Fernandez Aldeguer Spanish Federation of Rare Diseases 2013

Julian Isla Gomez Dravet Syndrome Foundation 2013 Ramon Marti Vall d'Hebron Institute of Research 2015 Roberto Martin Spanish Association of Pulmonary Hypertension 2014 Begonya Nafria Escalera Asociacion Espanola de Sindrome de Lowe 2013 Xavier Ortega Vall d'Hebron Institute of Research 2015 Blanca Quijano Ruiz FIBICO-IMIBIC_SCREN (Spanish Clinical Research Network) 2015 _ECRIN Rebeca Sanchez Calle Asociacion de las mucopolisacarisosis y sindromes 2015 relacionados Francesc Cayuela Solano Asociation Espanola de Enfermos de Glucogenosis 2014 Georgiana Stoica ICIQ Institute of Chemical Research of Catalonia 2015 Sweden Britta Berglund Swedish EDS Association 2009/2010 Cecilia Bjargo Prader-Willi Syndrome Association in Sweden 2009/2010 Maria Gardsater Rare Diseases Sweden 2009 Nanda Holm Rare Diseases Sweden 2011 Orica Lundgren Agrenska - National Centre of Rare Diseases 2008 Maria Michelfelder Primary Immunodeficiency Organisations 2013 Lise Murphy Marfanforeningen 2009/2010 Switzerland Christina Fasser Retina International 2015 Peter Lack Childhood Cancer Foundation Basel 2013 Christoph Poincilit INPDA 2015 Ukraine Oksana Kulish Pulmonary Hypertension Ukrainian Rare Disease 2015 Association- PH URDA Vitaliy Matyushenko Kharkiv Charitable Foundation 2012 Andriy Shatillo Children with Spinal Muscular Atrophy 2011 Oksana Chalenko Association of Handicapped Children with Progressing 2013 Muscular and Neuromuscular Diseases. Inna Krulko Ukranian Union of Patients Organisations 2013 United Kingdom Hana Ayoob AKU Society 2013 Catherine Burgess Pseudomyxoma Survivor 2012 John Dart DEBRA International and DebRA UK 2009/2010 Jose Drabwell Internation Patient Organisation for Primary 2008 Immunodeficiencies (IPOPI) Lesley Greene Cystinosis and Metabolic Disorders 2009/2010 John Gurhy Ataxia UK 2009 Ann Hale Global Organisation for Lysosomal Diseases (GOLD) 2008 Tess Harris PKD Charity 2013 Sally Hicks The Fragile X Society 2009 Glenn Irvine Advocacy for Neuroacanthocytosis Patients 2011 Alexandra Johnson Joining Jack 2014 Carmen Lavin Myasthernia Gravis Association 2014 Kerry Leeson-Beevers Alstrom Syndrome UK 2008/2010 Roanna Maharaj UK Thalassemia Society 2013 Bonnie McKerracher Chromosome 18 Registry and Research Society 2013 Aaron McPeake Behcets Syndrome Society 2009/2010 Kay Parkinson Alstrom Syndrome (UK) 2011 Chris Philips Behcets Syndrome Society 2014 Jill Prawer Lipoprotein Lipas Deficiency on RareConect 2013 Oli Rayner Spit it out Cystic Fibrosis 2013 Laura Rooke Ataxia UK 2008 Nick Sireau AKU Society 2011 Christos Sotirelis UK Thalassaemia Society 2009/2010 Oliver Timmis AKU Society 2012 Carole Trowbridge Myasthenia gravis association 2011 Richard West UK Behcets Syndrome Society 2008/2010 Russell Wheeler Rare Disease UK 2012 Rose Woodward Kidney Cancer Support Network and Rarer Cancers 2012 Foundation Anisha Zaman Behcets Sydnrome Society 2013 Lynne Zwink The Fragile X Society 2010 Tom Koukoulis UK Thalassaemia 2015 Graham McClorey Oxford University 2015 Amy Simpson Genetic Alliance 2015 Gillian Thomas Rare Disease UK and Myeloma UK 2015