Because many lysosomal storage disorders are so rare, patients may often feel alone in their diagnosis. There are many organizations and societies that help bring patients together with others who have shared their experiences. In addition, they can provide educational and practical information and advocate on behalf of patients.

Genzyme does not endorse the organizations here and provides these links for informational purposes only.

If you are a patient society supporting patients with an LSD and would like to be listed here, please send us an email.

Acid Maltase Deficiency Association
P.O. Box 700248
San Antonio, Texas 78270-0248
Phone: (210) 494-6144
Fax: (210) 490-7161

Ara Parseghian Medical Research Foundation

Batten Disease Support and Research Association

Ben's Dream - Sanfilippo Research Foundation

Cameron and Hayden Lord Foundation

Canadian Society for Mucopolysaccharide (MPS) and Related Diseases

Children Living with Inherited Metabolic Diseases (CLIMB)

Children's Gaucher Research Fund

Cystinosis Foundation UK

Cystinosis Research Network

European Gaucher Alliance

European Organisation for Rare Diseases

Fabry Support and Information Group

Genetic Alliance

Global Organisation for Lysosomal Diseases (GOLD)

The Hide and Seek Foundation for Lysosomal Disease Research

Hunter's Hope Foundation

International Gaucher Patient Organizations

International Patient Advocacy Association (IPAA)

International Society of Mannosidosis and Related Diseases

Krabbe’s Kids

Krabbe's Family Network

Late Onset Tay-Sachs Foundation

Lysosomal Diseases Australia

Metachromatic Leukodystrophy (MLD) Foundation

Muscular Dystrophy Association

National Fabry Disease Foundation (NFDF)

National Gaucher Foundation

National MPS Society

National Niemann-Pick Disease Foundation

National Organization of Rare Disorders (NORD)

National Tay-Sachs and Allied Diseases

New Zealand LSD Support Groups

Sanfilippo Syndrome Medical Research Foundation

Sophia's Garden Foundation

The Society for MPS (UK)

United Kingdom Gauchers Association

United Leukodystrophy Foundation