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Organizations
Patient Organizations
Advocacy & Support ServicesPatient Organizations
Listed below are patient organizations that provide information and support that may be helpful to people with Pompe disease and their families. These organizations are grouped into 2 categories: Global and the United States.
Global Patient Organizations
Association for Glycogen Storage Disease, United Kingdom
Allan Muir
Phone: +011 44 730 231 554
http://www.pompe.org.uk
The Association of Glycogen Storage Diseases, UK (AGSD) provides support and help for families directly and through support groups for all persons affected by Glycogen Storage Disease (GSD). Within the Association for Glycogen Storage Disease (UK), the Pompe's Group distinctly serves those affected by Pompe. The Pompe's Group of the AGSD - UK publishes an online newsletter and guide for families affected by Pompe disease.
Australian Pompe’s Association
The Australian Pompe’s Association is a member organization affiliated with the International Pompe Association. Its Website includes information about the symptoms, diagnosis, and treatment of Pompe disease. The site also includes a section called Things Pompe’s Patients Need to Know, which contains practical tips to help manage the disease.
Children Living with Inherited Metabolic Diseases (CLIMB)
Children Living with Inherited Metabolic Diseases (CLIMB) is an organization in the United Kingdom working on behalf of children, young people, and families affected by metabolic diseases. The organization is based in the UK, but will send disease information abroad.
Helping Hands… Loving Hearts Foundation
The Helping Hands...Loving Hearts Foundation is an organization that provides financial assistance for various expenses needed for those with Pompe disease.
International Pompe Association (IPA)
IPA secretariat: Ria Broekgaarden
www.worldpompe.org
The International Pompe Association (IPA) is a federation of Pompe disease patient groups worldwide. The IPA seeks to coordinate activities and share experience and knowledge between 32 affiliated organizations from countries around the world.
Patient Organizations within the United States
Acid Maltase Deficiency Association (AMDA)
Phone: (210) 494-6144 or (210) 490-7161
www.amda-pompe.org
The Acid Maltase Deficiency Association (AMDA) was formed to assist in funding research and to promote public awareness of Acid Maltase Deficiency, another name for Pompe disease. This US organization is a member of the International Pompe Association.
Association for Glycogen Storage Disease
The Association for Glycogen Storage Disease is a parent and patient oriented support group based in the United States. The AGSD was established for parents of and individuals with GSD to communicate, share their successes and concerns, share useful findings, provide support as needed, create an awareness of this condition for the public, and to stimulate research in the various forms of glycogen storage diseases.
Muscular Dystrophy Association (MDA)
The Muscular Dystrophy Association (MDA) is a non-profit, voluntary health agency dedicated to providing comprehensive medical services to individuals affected by neuromuscular diseases. Pompe disease is one of the more than 40 neuromuscular diseases covered by MDA.
National Organization for Rare Disorders, Inc. (NORD)
The National Organization for Rare Disorders, Inc (NORD) is a not-for-profit federation of voluntary health organizations dedicated to helping people with rare orphan diseases and assisting the organizations that serve them.
United Pompe Foundation
David W. Hamlin
Phone: (559) 227-1898
Email: david@unitedpompe.com
http://www.unitedpompe.com
The United Pompe Foundation was formed to assist patients and/or their families with medical costs and other expenses that may not be covered by insurance. The Foundation also hopes to raise public awareness of Pompe disease.
