There are a variety of resources available to help you navigate this rare journey. The Pompe.Community resource list includes (organizations that provide support and advocacy for Pompe patients and their families, as well as information on clinical trials and research studies).
If you would like to be included or excluded from this list, please contact us.
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The Acid Maltase Deficiency Association was established in 1995 to assist in funding research and to promote public awareness of Pompe disease. Pompe disease is one of a family of 49 rare genetic disorders known as Lysosomal Storage Diseases or LSDs. Pompe disease is also known as Acid Maltase Deficiency or Glycogen Storage Disease type II. It affects an estimated 5,000 to 10,000 people in the developed world.
Website: AMDA-Pompe.org
The Acid Maltase Deficiency Association (AMDA)
The Australian Pompe Association is dedicated to supporting the needs of Australian Pompe patients, their families and Carers. The APA was founded by four dedicated patients in 1997, Helen Walker, Bet Cook, Bob Morrison and Gloria Halliwell who were committed to fighting for the Australian Pompe Cause.
Website: AustralianPompe.org.au
The Australian Pompe Association
ClinicalTrials.gov is a place to learn about clinical studies from around the world.
Website: ClinicalTrials.gov
ClinicalTrials.gov
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
Website: EveryLifeFoundation.org
The EveryLife Foundation for Rare Diseases
Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. Global Genes provides patient advocates with a continuum of services to accelerate their path from early support and awareness through research readiness, using a collaborative approach that involves biopharma, researchers and funders, with data as a central core.
Website: GlobalGenes.org
Global Genes
The Pompe disease community has grown over many years to be a hugely supportive group of individuals, families, healthcare professionals and academics. This group promotes physical and mental wellbeing of all members of this very special community.
Website: Pompe.uk
Pompe Support Network
Exploring the realities of people with Pompe Disease to establish community, offer representation, and instill hope.
Website: PompePerspectives.com
Perspectives of the Pompe World
PubMed® comprises more than 37 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full text content from PubMed Central and publisher web sites.
Website: PubMed.NCBI.NLM.NiH.gov
PubMed®
The Assistance Fund (TAF) is an independent charitable patient assistance organization that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses. We currently manage more than 90 disease programs, each of which covers all FDA-approved treatment for the disease named in the program. Since 2009, TAF has helped more than 190,000 people access critical treatment for life-threatening, chronic, and rare diseases.
Website: TAFcares.org
The Assistance Fund
The ACMG is the only nationally recognized interdisciplinary professional membership organization that represents the interests of the entire medical genetics team including clinical geneticists, clinical laboratory geneticists, and genetic counselors. Together, the ACMG and its members engage in coordinated efforts to improve patient care, ensure optimal reimbursement for genetic service providers, establish standards of care and laboratory policy, and educate members about advances important to their practices.
Website: ACMG.net
American College of Medical Genetics and Genomics
The Charles Christopher Michael Golder Foundation for Pompe and Cancer Research – also known as Charlie’s Garden – is a charitable, non-profit organisation raising funds to support scientific research into cancer and rare genetic illnesses such as Pompe disease, among other endeavours. The organisation was founded in Vienna, Austria, on 29th October 2018 and is named after the late journalist Charles Golder.
Website: CharliesGarden.org
The Charles Christopher Michael Golder Foundation for Pompe and Cancer Research
Grant's Giants Pompe Nonprofit was formed after our son, Grant, was diagnosed with Infantile Pompe disease. Grant's Giants purpose is to serve, educate, advocate, and support the Pompe community both locally and nationally.
Website: GrantsGiants.com
Grant's Giants
Marshall’s Mountain was formed after our son was diagnosed with Pompe disease. We aim to uplift the Pompe community by funding research, providing education, and offering patient support. Our mission has grown to improve the quality of life of those affected by Pompe disease and other rare diseases and disabilities.
Website: MarshallsMountain.org
Marshall’s Mountain
The New Zealand Pompe Network was set up in 2010 when there were just 4 patients diagnosed with Pompe. We felt that with so many rare diseases, Pompe got lost amongst the crowd, so we decided to set up our own group. NZPN achieved charitable status in 2011. Our mission is to provide information and support to our New Zealand Pompe community. As of December 2022, NZ has 15 patients.
Website: NZPompe.network
The New Zealand Pompe Network (NZPN)
Here at Pompe Alliance, we see the value in everyone. We want to be a catalyst for positive change, and since our beginnings in 2018, we’ve been driven by the same ideas we initially founded our Public Services Organization upon: support, empowerment, and progress. Our mission is "To provide supportive services, education and information to patients, caregivers, medical professionals and community stakeholders."
Website: PompeAlliance.com
Pompe Alliance
Website provides a great 1-pager document for people new to Pompe.
Website: PompeInformation.org
Pompe Information
This website provides a database of all the different GAA variants of Pompe disease.
Website: PompeVariantDatabase.nl
Pompe disease GAA variant database
The mission of the Pompe Warrior Foundation is to promote research, educate, and empower individuals and families affected by Pompe Disease and other Lysosomal Storage Diseases. We hope to highlight the importance of diet in treating these diseases. We will support research into new dietary treatments and utilize that research to educate individuals and the medical community. We hope to create a happy and healthier lifestyle for all involved. We will empower patients, families, and medical professionals to explore how dietary changes may play a role in treating these rare diseases.
Website: PompeWarriorFoundation.com
Pompe Warrior Foundation
To spread awareness of Pompe Disease by sharing personal experiences and stories of those afflicted. To serve, advocate, and support the advancement of research and treatments.
Website: RykersFoundation.org