BRAINS FOR BRAIN Onlus Foundation (B4B)

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 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 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-Gruppe Deutschland e.V.

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


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)