The International Pompe Association (IPA) is an international federation of Pompe disease patient’s groups.
For individuals and families who are living with Pompe disease, and for the health care professionals who treat them. From Genzyme Corporation.
The LSD Support Society of India is a group, envisaged to be made up of people who know what it’s like to live with Lysosomal Storage Disorders.
4. The Pompe Center at Erasmus
They are organizing a Patient Registry in collaboration with the IPA.
5. United Pompe Foundation
The United Pompe Foundation was formed to assist patients and/or their families with medical costs and other expenses that these patients and families face and may not be able to cover, or fully cover, through their insurance.