Patients and Families support
List of Organizations dedicated to patients, their families and the entire Community of people interested in Rare Diseases
ORPHANET, the portal for rare diseases and orphan drugs
InNerMeD-I-Network, the first European Information Network on Inherited NeuroMetabolic Diseases
Cystinosis
Cystinosis Research Network
Cystinosis Foundation UK
Cystinosis Foundation Ireland
The Cystinosis Foundation
Cystinose-Selbsthilfe e.V Cystinosis Foundation, Germany
Fabry disease
Fabry Support and Information Group
Canadian Fabry Association
Fabry Community Genzyme Corporation site
Fabry Pasientforening, Norge
Fabrysuisse Deutsch, Francais, Italiano
Morbus Fabry Selbsthilfegruppe e.V. Deutsch
Gaucher Disease
National Gaucher Foundation
Gauchers Association
Eurpean Gaucher Alliance
Children’s Gaucher Research Fund
Gaucher Gesellschaft Deutschland e.V
Associazione Italiana Gaucher
Israel Gaucher Association
Gaucher Vereniging Nederland
Leukodystrophies, Krabbe disease
Hunter’s Hope Foundation
Krabbe’s Family Network
United Leukodystrophy Foundation
Mucopolysaccharide Diseases
Mucopolysaccharide & Related Diseases Australia
Canadian MPS Society
National MPS Society USA
Society for Mucopolysaccharide Diseases UK
MPS I disease Genzyme Corporation site
What is MPS I? BioMarin Pharmaceuticals site
What is MPS VI? BioMarin Pharmaceuticals site
MPSVI.com BioMarin Pharmaceuticals site
Foreldregruppe for MPS sykdommene (FRAMBU)
Gesellschaft für Mukopolysaccharidosen
Gesellschaft für Mukopolysaccharidosen e.V.
L’Associazione Italiana per le Mucopolisaccaridosi e Malattie Affini
Spolecnost pro mukopolysacharidosu
Verein für Mukopolysaccaridosen Schweiz
Neuronal Ceroid Lipofuscinoses, Batten’s disease
Associazione italiana per la NCL
Batten Disease Support and Research Association
Batten Disease Family Association UK
NCL-Foundation http://www.ncl-stiftung.de/
Niemann Pick Disease
National Niemann-Pick Disease Foundation, Inc.
The Niemann-Pick Disease Group (UK)
Ara Parseghian Medical Research Foundation
Die Niemann Pick Selbsthilfegruppe e.V.
Pompe Disease (Acid maltase deficiency; glycogen storage disease type II)
Acid Maltase Deficiency Association
International Pompe Association (IPA)
United Pompe Foundation
Pompe’s Group of the Association for Glycogen Storage Disease (UK)
Vereniging Spierziekten Nederland
SHG Glykogenose Deutschland e.V
Pompe community – Genzyme Corporation site
OTHER
National Tay sachs and Allied Diseases Association Neurological disorders
International Society for Mannosidosis and Related Disorders Glycoprotein disorders
Associazione Italiana Còrea di Huntington di Roma Onlus (AICH-Roma Onlus)