| The following is a partial list of
sites that contain information that is important to Pompe
patients.  The Pompe Center at Erasmus.
They are organising a
Patient Registry in collaboration with the IPA.
the UK Pompe group's links page,
which is pretty good
(he said, modestly)
Gezinus Wolters Personal Homepage
GOLD Website -- The Global Organization for Lysosomal
Diseases
INFORESP -- Information service for respiratory care
The Verbeek Family's Homepage
The United Pompe Foundation
IPA Affiliate sites (ie AMDA,
AGSDUK, VSN, etc) can be found on the Contacts page of this site
If you know of any other
sites that should be included, please contact the IPA webmaster, Tiffany House, so they can be included.
|
