Pompe Deutschland e.V.

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About us: Pompe Germany

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.

We are open for international contacts and suggestions. Please Diese E-Mail-Adresse ist vor Spambots geschützt! Zur Anzeige muss JavaScript eingeschaltet sein!!

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.

At a Glance

ABOUT POMPE GERMANY
  • Registered association
  • Charitable, non-profit status
  • National patient support group
  • Independent
GUIDING PRINCIPLES
  • We rely on 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
  • We are part of a global community
MISSION
  • Support patients
  • Improve therapies
  • Facilitate education and research
ACTIVITIES
  • Information and Counseling
    > Informed patient
    > Pompe hotline
  • Meetings and Education
    > for patients
    > for experts
  • Networking and Cooperation
    > trustful
    > fair
    > transparent
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