PATIENT ORGANIZATION WEBSITES
- A.F.G-French Association for Glycogen Storage
(French only) - 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
- PAN Foundation
Founded in 2004, the Patient Access Network Foundation™ is one of the nation’s largest charitable organizations, providing financial assistance that helps people afford their prescription medications. - 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
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. - LGMD-Diagnosis.org
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.
You can search by:
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Name - Sanofi Website
PATIENT WEBSITES
- Angel Flight NE
Angel Flight Ne is a 501(c)3 nonprofit organization that coordinates FREE air and ground transportation for medically stable patients seeking medical care for healthcare conditions including rare and ultra-rare diseases that requires them to travel hundreds, if not thousands, of miles for the specialized care they need. - Fight Pompe
Juan Magdorag’s Blog detailing his fight against Pompe’s Disease. - Gezinus Wolters’ Personal Homepage
The personal web site of Gezinus Wolters. - Mental Health Conditions
The National Alliance on Mental Illness’ website is an excellent source of information regarding mental health and wellness. - What is Gene Therapy?
This website is a wonderful resource for non-medical professionals to better understand what Gene Therapy is. - 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.”
MEDICAL WEBSITES
- Pompe Center Erasmus MC Rotterdam
This 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. - Genetic Therapeutics Clinic at Inova Health System
The Genetic Therapeutics Clinic at Inova Health System in Fairfax, VA is a dedicated clinic to genetic conditions for which a specialized genetic treatment/therapy is approved and available for both children and adults. These conditions include many lysosomal storage diseases, such as Pompe disease and other diseases.
GTC pdf here!
Acid Maltase Deficiency Association
If you are interested in learning more about Pompe Disease and would like to make a contribution in support of necessary research, please contact us at:
info@amda-pompe.org
AMDA
PO Box 700248
San Antonio, Texas 78270 USA