Patients
Patients can get help from national patient associations. Many national groups are networking among each other through the International Pompe Association (IPA). IPA has excellent contacts to researchers, hospitals, and pharma industry. Don't hesitate to contact your national group or IPA if you need support, and join your national group to strengthen the solidarity among the patients. Patient groups and IPA can answer questions about Pompe and therapy, national regulations and health systems.
Links
- International Pompe Association (IPA)
Worldwide representation of the national patient associations. - Pompe Connections
IPA brochure designed to help Pompe patients deal with the different issues that they might face. - Pompe Connections - Treatment Edition
IPA brochure listing resources on learning more about treatment of Pompe Disease. - GSDnet
International mailing list.