Pompe disease


Are there good support groups for Pompe disease?

There are several good support groups for Pompe disease. These support groups help explain Pompe disease features, inheritance, treatment, and research opportunities. They also raise money for research. One group is the Acid Maltase Deficiency Association and another is the United Pompe Foundation. The Muscular Dystrophy Association supports people with multiple diseases causing muscle weakness, including Pompe disease. There are several Pompe support groups on Facebook as well such as the International Pompe Association page and listservs such as GSDnet.

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