PATIENT ORGANIZATION WEBSITES
- A.F.G-French Association for Glycogen Storage
- AEEG–Asociacion Espanola Enfermos Glucogenosis
Glycogen Storage Disease Association in Spain.
- Association for Glycogen Storage Disease UK
The Pompe Organization that is based in the United Kingdom.
- Association VML–Vaincre les Maladies Lysosomales
VML-French Lysosomal Storage Disease Organization. (French/English)
- Associazione Italiana Glicogenosi (AIG)
Glycogen Storage Disease Association in Italy
- Australian Pompe’s Association
The Australian Pompe’s Association is a Support Group for patients who have been diagnosed with Pompe’s Disease and live in Australia.
- Genetic Alliance
- International Pompe Association
The International Pompe Association (IPA) is a coalition of Pompe organizations from across the world.
- International Ventilator Users Network
The premier source of information about living independently with a ventilator.
- Lysosomal Diseases Australia (LDA)
Lysosomal Diseases Australia (LDA) is a national umbrella organisation formed to represent the interests of people effected by lysosomal storage disorders including their families and carers, to maximise resources available for support services, treatment and research.
- New Zealand Pompe Network
- Pompe Association in Japan
The web site for the Pompe association in Japan.
- Selbsthilfegruppe Glykogenose Deutschland e.V.
German Glycogen Storage Disease Association.
- The Evanosky Foundation
This foundation has been working to get newborn screening for Pompe Disease (and four other genetic conditions) approved on a state level. So far, they have succeeded in Illinois, and are now working on Missouri. Please visit their website to see how you can help.
- VSN–Vereniging Spierziekten Nederland
The Dutch Organization for Pompe’s Disease
- Genetic and Rare Diseases Information Center
Established by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD), the Genetic and Rare Diseases Information Center employs experienced information specialists to answer in English or Spanish questions from the general public, including patients and their families, health care professionals, and biomedical researchers.
LGMD-diagnosis.org is a diagnostic program for individuals without a genetic explanation for their muscle weakness and is maintained by the consortium of foundations endorsing this diagnostic initiative. It offers both an online quiz for individuals and a new physician application to determine eligibility for free genetic sequencing. Eligible individuals who consent to participate will send in a saliva sample for analysis and will receive a genetic report that they can discuss with their physician for genetic counseling and proper disease management. 35 genes are tested for variants and results are provided directly to the patients free of charge. The website also provides links to all the foundations in this consortium. www.lgmd-diagnosis.org
- Pompe Specialists in the U.S
Need to find a Health Care Professional / Specialist in your area?
The U.S. News Doctor Finder includes nearly all physicians in the U.S.
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- Sanofi Website