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
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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! - Medlive
Dedicated to improving health outcomes for all, this website gives you access to timely, credible medical education led by renowned specialists and leading centers of excellence. Millions of healthcare providers, patients, and caregivers engage with their online content to discover insights on how to manage different cancers, neurological disorders, rare diseases and other conditions.
PATIENT WEBSITES
- Accessia Health
Accessia Health® is a national nonprofit 501(c)3 organization that provides programs and services to individuals of all ages who are living with a rare or chronic health conditions. With 80+ disease programs and over $1 billion in assistance distributed, they offer case management, education, and financial support for health insurance premiums, medication copayments, travel, and other essential medical expenses. - 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. - Give An Hour Mental Health and Support Group Service
Give an Hour provides barrier-free access to mental health care and educational resources for those in need - Give An Hour – Rare Disease Caregivers
Give an Hour announces Rare Belonging Grant from the Alexion Charitable Foundation, a one year grant to support rare caregivers mental health. - 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.”
Acid Maltase Deficiency Association
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