Patient Organization Websites

• International Pompe Association
  The International Pompe Association (IPA) is a coalition of Pompe organizations from across the world.
• Association for Glycogen Storage Disease UK
  The Pompe Organization that is based in the United Kingdom.
• VSN--Vereniging Spierziekten Nederland
  The Dutch Organization for Pompe's Disease
• 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.
• Selbsthilfegruppe Glykogenose Deutschland e.V.
  German Glycogen Storage Disease Association.
• Associazione Italiana Glicogenosi (AIG)
  Glycogen Storage Disease Association in Italy
• Pompe Association in Japan
  The web site for the Pompe association in Japan.
• AEEG--Asociacion Espanola Enfermos Glucogenosis
  Glycogen Storage Disease Association in Spain.
• New Zealand Pompe Network
  
• NORD (National Organization for Rare Diseases)
  NORD is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
• Genetic Alliance
  
• 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.
• 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.
• A.F.G-French Association for Glycogen Storage
  (French only)
• Association VML--Vaincre les Maladies Lysosomales
  VML-French Lysosomal Storage Disease Organization. (French/English)
• International Ventilator Users Network
  The premier source of information about living independently with a ventilator.

Professional Websites

• 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.
• Genzyme Corporation Web Site
  

Patient Websites

• The Story of the Development of a Treatment for Pompe's Disease by Kevin
  As Kevin describes the Blog: "I don't know half as much about Pompe disease as I like to think I do. I was active in the patient community from 1993 - 2003 and had the privilege of watching the development of a treatment for Pompe disease at first hand. That is as much of a qualification as I have for writing this."
• Fight Pompe
  Juan Magdorag's Blog detailing his fight against Pompe's Disease.
• Gezinus Wolters' Personal Homepage
  The personal web site of Gezinus Wolters.

Medical Websites

• Pompe Center Erasmus MC Rotterdam
  his website is used as a public tool to communicate information to patients, colleague-scientists/clinicians, genetic counsellors and others with special interest in Pompe disease.