Interacting with the Pompe Community

Category: Archive
November 17, 2015

Please use the many ways to communicate and interact with other patients, national patient associations and others, e.g:

  • The mailing list GSDNet
  • Pompe Facebook groups
  • Personal communication

The IPA can be contacted by email, phone or fax (see footer of this page), or visit the IPA Facebook page.

For communication on the patient advocacy level (i.e. between the IPA members and contacts), we have set up a secret (hidden) Facebook group. You can participate in this group by invitation only.

Previously installed experimental channels, such as a helpdesk system and a community forum, have been dropped.

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