Resources & Links
You don’t have to navigate Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup that damages muscles and can affect breathing and, in some cases, the heart. alone. Below is a growing collection of organizations, programs, and support networks that other patients, caregivers, and families have found helpful, from clinical specialists and research groups to financial assistance and everyday support. Everything is organized by category so you can find what you need quickly, whether that’s connecting with a fellow Pompe family or getting help with a medical bill. If you know of a resource that belongs here, we’d love to hear from you.
US Patient & Family Organizations
Grant's Giants
Family-founded nonprofit funding Pediatric Pompe Conference scholarships, direct financial assistance, research, and newborn-screening advocacy.
Marshall's Mountain
Family-founded nonprofit funding Pompe research, education, and patient support, including its Moving Mountains trackchair program.
Muscular Dystrophy Association (MDA)
Supports people with Pompe disease and other neuromuscular conditions through MDA Care Centers and patient education.
National Organization for Rare Disorders (NORD)
Advocates for people with rare diseases and maintains a dedicated Pompe disease information page and physician guides.
Pompe Alliance
Provides mentoring, financial assistance, education, and advocacy for people affected by Pompe disease and their care teams.
Pompe Warrior Foundation
Funds Pompe disease research and offers education, expert webinars, and a community platform for patients and families.
Pompe.Community
A curated hub connecting the Pompe community with advocacy groups, financial assistance programs, and clinical trialA research study that tests new treatments or approaches in people. information.
The Evanosky Foundation
Supports families affected by lysosomal storage disorders broadly.
United Pompe Foundation
Helps U.S. Pompe patients and families cover medical costs and expenses not fully covered by insurance.
International Pompe & GSD Organizations
A.F.G. – French Association for Glycogen Storage Diseases
Supports individuals in France affected by glycogenA stored form of sugar used for energy. storage diseases and promotes related medical research.
AEEG – Asociación Española Enfermos Glucogenosis
Supports people with glycogenosis in Spain as part of the country’s national rare disease federation.
Association for Glycogen Storage Disease UK (AGSD-UK)
A UK charity supporting individuals and families affected by glycogen storage disease, including Pompe disease.
Association VML – Vaincre les Maladies Lysosomales
France’s leading patient-funded organization supporting research into lysosomal diseases, including Pompe disease.
Associazione Italiana Glicogenosi (AIG)
Supports Italian families affected by glycogenoses and funds related scientific research.
Australian Pompe's Association
Raises awareness of Pompe disease in Australia and advocates for newborn screening and patient support. Previously linked via australianpompe.com, which now redirects here.
International Pompe Association (IPA)
A federation of more than 50 Pompe patient organizations worldwide, coordinating information and advocacy across countries.
New Zealand Pompe Network
A charitable organization supporting individuals diagnosed with Pompe disease throughout New Zealand.
Pompe House
Japan’s national association for Pompe disease patients, families, and medical professionals, offering study sessions, seminars, and outreach to support early detection, treatment, and patients’ daily lives.
Selbsthilfegruppe Glykogenose Deutschland e.V.
A German self-help organization offering information and peer support for people with glycogen storage diseases.
VSN – Vereniging Spierziekten Nederland
Supports people with muscle diseases, including Pompe disease, throughout the Netherlands.
General Rare Disease & Genetic Disorder Resources
Genetic Alliance
A nonprofit network connecting families and communities through genetic health advocacy and research support.
Genetic and Rare Diseases Information Center (GARD)
A free NIH service providing reliable, easy-to-understand information on rare and genetic diseases, including Pompe disease.
Global Genes
A leading U.S. rare disease advocacy nonprofit offering toolkits, community resources, and patient grants.
Medical & Clinical Resources
Care Center Locator – MDA
A nationwide network of 150+ specialized clinics for neuromuscular diseases; use this page to find an MDA Care Center near you experienced in treating Pompe disease.
Genetic Therapeutics Clinic at Inova Health System
A U.S. clinic offering genetic counseling and treatment coordination for patients with Pompe disease and other genetic disorders.
Medlive
General healthcare-education site; no clear Pompe-specific content found. Confirm relevance before keeping.
Pompe Center – Erasmus MC Rotterdam
A specialized center in the Netherlands providing clinical care and research expertise in Pompe disease.
Financial Assistance
Accessia Health
Provides financial assistance, copay support, and resources to help patients with rare and chronic conditions afford care.
HealthWell Foundation
Provides copay, premium, and out-of-pocket cost assistance for underinsured patients with chronic and rare diseases.
NeedyMeds
A free national database of patient assistance programs, disease-specific charities, and low-cost clinics.
FundFinder – PAN Foundation
A free tool that notifies patients when disease-specific financial assistance funds open.
PAN Foundation
Helps patients afford treatment through copay and premium assistance. Merged with Patient AdvocateA person who helps patients and families navigate care, information, services, and support. Foundation in 2026; monitor for a future branding change.
Pompe Disease Fund – PAN Foundation
PAN Foundation’s dedicated fund providing copay assistance specifically for Pompe disease treatment costs. Fund availability opens and closes on a rolling basis; verify it’s open before publishing.
Medical Transportation
Air Charity Network
Connects patients nationwide with volunteer pilots offering free medical flights.
Angel Flight NE
Provides free air and ground transportation so patients in the Northeast can reach medical care.
Angel Flight West
Provides free flights to medical care for patients in the Western United States.
Mercy Medical Angels
Provides free or low-cost ground and air medical transportation for patients nationwide.
Mental Health & Caregiver Support
ARCH National Respite Network
Helps family caregivers find short-term respite care in their state.
Give An Hour
Connects individuals and families with free mental health support.
Give An Hour – Rare Disease Caregivers
Give An Hour’s program offering free mental health support specifically for rare disease caregivers.
Mental Health Conditions – NAMI
Provides education and resources on mental health conditions and support for those affected by them.
National Family Caregiver Support Program
A federally funded program offering respite care, counseling, and support services for family caregivers.
Living with Pompe: Equipment & Daily Life
International Ventilator Users Network (IVUN)
Connects ventilatorA method of assisting or replacing breathing using a machine that moves air in and out of the lungs. users, health professionals, and industry to share information and support.
Gene Therapy & Genetics Education
"What Is Gene Therapy?"
Educational resource explaining the basics of gene therapyA developing treatment that aims to fix, replace, or add genetic instructions. for patients and families. Sponsored by Astellas Gene Therapies.
End-of-Life, Funeral, & Bereavement Support
Funeral Consumers Alliance
A nonprofit consumer advocacy group helping families plan and afford funerals.
National Alliance for Children's Grief
Provides resources to help grieving children, teens, and the adults who care for them.
Share Pregnancy & Infant Loss Support
A peer support network for families experiencing miscarriage, stillbirth, or infant death.
The Compassionate Friends
Supports families grieving the death of a child of any age.
The TEARS Foundation
Provides funeral cost financial assistance and support for families experiencing pregnancy or infant loss.
Community Voices
"The Story of the Development of a Treatment for Pompe's Disease"
A patient’s personal blog documenting the development of enzymeA protein that helps the body carry out chemical reactions. replacement therapy for Pompe disease. Recommend verifying manually.
Acid Maltase Deficiency Association
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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
THE AMDA
PO Box 700248
San Antonio, Texas 78270 USA