There are now 175 Friends of Rare Disease Day
22q11 Ireland Support Group
Participation type: Other Patient Organisation / Contact Person: Anne Lawlor
Asociación Mexicana para el Estudio de la Acidosis Tubular Renal, A.C.
Participation type: Other Patient Organisation / Contact Person: Fernanda Arce
Associação Paulista dos Familiares e Amigos dos Portadores de Mucopolissacaridoses
Participation type: Other Patient Organisation / Contact Person: Regina Célia Fanti Garcia Próspero
Associação Portuguesa de Osteogénese Imperfeita
Participation type: Other Patient Organisation / Contact Person: Céu Barreiros
ASSOCIATION BELGE CONTRE LES MALADIES NEURO-MUSCULAIRES ABMM ASBL
Participation type: Other Patient Organisation / Contact Person: Jean-Marie HUET
association des malades et handicapés de behcet
Participation type: Other Patient Organisation / Contact Person: association
Association Huntington Espoir Grand Est (HEGE)
Participation type: Other Patient Organisation / Contact Person: Sylvie CASTELLA
Association pour l'Information et la Recherche sur le Syndrome SAPHO
Participation type: Other Patient Organisation / Contact Person: Nathalie DE BENEDITTIS
Association Shifa des Maladies NeuroMusculaires(ASMNM)
Participation type: Other Patient Organisation / Contact Person: Dr Bouras Abdelkader
Australasian Tuberous Sclerosis Society Inc
Participation type: Other Patient Organisation / Contact Person: Clare Stuart
Australian Galactosaemia Support Network
Participation type: Other Patient Organisation / Contact Person: Chris Bishop
Breathtakers OB Trust
Participation type: Other Patient Organisation / Contact Person: Lynne Thompson
CADASIL Society (in process of formation)
Participation type: Other patient organisation / Contact Person: Barbara Hunt
Canadian Marfan Association
Participation type: Other Patient Organisation / Contact Person: Sharmin Jamal, sharmin@marfan.ca
Canadian PKU & Allied Disorders Inc.
Participation type: Other Patient Organisation / Contact Person: Nicole Pallone
Care-for-Rare Foundation
Participation type: Other Patient Organisation / Contact Person: Beatriz Parente
ChILD Lung Foundation
Participation type: Other Patient Organisation / Contact Person: Carlee Gilbert
childrens cranialfacial association
Participation type: Other patient organisation / Contact Person: nicole
Croatian Leukemia and Lymphoma Society
Participation type: Other Patient Organisation / Contact Person: Jadranka Santini
Debra Portugal - Associação Portuguesa de Epidermólise Bolhosa
Participation type: Other Patient Organisation / Contact Person: Carla Sa Couto
Die Schmetterlinge e. V. - Schilddrüsenbundesverband
Participation type: Other Patient Organisation / Contact Person: Frau Kirsten Wosniack
Fabry Support Group Australia
Participation type: Other patient organisation / Contact Person: Megan Fookes
Fibromuscular Dysplasia Society of America
Participation type: Other Patient Organisation / Contact Person: Lisa Foster
Friedreich's Ataxia Research Alliance (FARA)
Participation type: Other Patient Organisation / Contact Person: Felicia DeRosa
G-PACT (Gastroparesis Patient Association for Cures and Treatment)
Participation type: Other Patient Organisation / Contact Person: Brittney Riley
Girl Power 2 Cure, Inc.
Participation type: Other Patient Organisation / Contact Person: Ingrid Harding
Global Hydranencephaly Foundatio
Participation type: Other Patient Organisation / Contact Person: Alicia Harper
Idiopathic Intracranial Hypertension UK
Participation type: Other Patient Organisation / Contact Person: Natalie Garrett
International Pemphigus and Pemphigoid Foundation
Participation type: Other Patient Organisation / Contact Person: Marc Yale
ITP Support Association
Participation type: Other Patient Organisation / Contact Person: Anthony Heard
Janine's Sarcoidosis Outreach Foundation
Participation type: Other Patient Organisation / Contact Person: Emma Carroll
Kokcinelo, la neurofibromatose, parlons-en
Participation type: Other Patient Organisation / Contact Person: Hélène Létang
Liddy Shriver Sarcoma Initiative
Participation type: Other Patient Organisation / Contact Person: Mary Sorens
Lithuanian association of patients with genetic neuromuscular diseases - Sraunija
Participation type: Other Patient Organisation / Contact Person: kristina antanaviciene
Lymphangiomatosis and Gorham's Disease Alliance - Europe
Participation type: Other patient organisation / Contact Person: Tracy Milne
Muscular Dystrophy Association Of New Zealand
Participation type: Other Patient Organisation / Contact Person: Miriam Rodrigues
New Jersey Platelet Disorder Support Association(NJPDSA)
Participation type: Other patient organisation / Contact Person: Linda McGuirl
Niemann-Pick Research Foundation
Participation type: Other Patient Organisation / Contact Person: David French
nwas.henochschonlein purpura association
Participation type: Other Patient Organisation / Contact Person: wendy smith
Partnership for Compassionate Use Therapies
Participation type: Other Patient Organisation / Contact Person: Jess Rabourn
Philippine Society for Orphan Disorders, Inc.
Participation type: Other Patient Organisation / Contact Person: Karen Panol
Rare Disease Foundation of Iran
Participation type: Other patient organisation / Contact Person: Elham Akbari
Regroupement québécois des maladies orphelines/Quebec Coalition of Orphan Diseases
Participation type: Other Patient Organisation / Contact Person: Gail Ouellette
Rhode Island Rare Disease Foundation
Participation type: Other Patient Organisation / Contact Person: Patricia Weltin
Scleroderma Research Foundation
Participation type: Other Patient Organisation / Contact Person: Amy Hewitt
Spastic Paraplegia Foundation
Participation type: Other Patient Organisation / Contact Person: Annette Lockwood
The Afternoon Nap Society
Participation type: Other Patient Organisation / Contact Person: Sarah Kucharski
The Foundation for Children with Atypical HUS
Participation type: Other Patient Organisation / Contact Person: Linda Burke
VAINCRE LES MALADIES LYSOSOMALES AU MAROC "VML MAROC"
Participation type: Other patient organisation / Contact Person: badia LAATIK
