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Pompe Germany ("Pompe Deutschland e.V.") aims to provide information and support to German speaking people affected by Pompe Disease. Pompe Germany is part of a global network that relies on the knowledge and experience of patients, patient support groups, physicians, scientists, universities, medical centers, research centers and industry. We recognize the expertise of all partners and believe that joining forces is key to success. Thus, Pompe Germany, as an independent organization, offers a trustful, fair and transparent cooperation for the benefit of Pompe patients.
Pompe Germany was founded on April 24, 2016 as a patient support group. We are a registered association and have received charitable, non-profit status from German fiscal authorities. See Impressum for details.
The core team of Pompe Germany is responsible for most German Pompe activities in the past two decades, including the International Conferences 2003 and 2013 in Heidelberg, Germany. Our Pompe Hotline is the #1 contact point for Pompe patients in Germany.