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Pompe Links

Miscellaneous
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1 ClinicalTrials.gov
ClinicalTrials.gov is a registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals. ClinicalTrials.gov is sponsored by the U.S. National Institutes of Health (NIH), other federal agencies, and private industry. The NIH has developed the registry in collaboration with the Food and Drug Administration (FDA), as a result of the FDA Modernization Act, which was passed into law in November 1997.
2 EU Clinical Trials Register
The EU Clinical Trials Register website allows you to search for information on clinical trials in European Union (EU) member states and the European Economic Area (EEA) and clinical trials which are conducted outside the EU/EEA if they form part of a paediatric investigation plan (PIP). The EU Clinical Trials Register website is hosted by the European Medicines Agency (EMA). You can find information on the design of each clinical trial, the sponsor, the investigational medicinal products and therapeutic areas involved and the status of the clinical trial.
3 Glycogen Storage Disease Network (GSDnet)
GSDNet is an unmoderated discussion list for all types of glycogen storage disease (GSD). The list is intended to be a resource and support network for individuals and families affected by one of the 11 types of GSD. Participation by medical and scientific professionals, and other relevant parties, is also encouraged.
As a supplement to GSDnet, there is a group on Facebook. It's called the 'GSDnet Facebook Colour Supplement' and is a hidden group - won't show up in searches etc. The idea is that it allows people to swap photos and other things not easily do-able via the GSDnet mailing list.
Just send an e-mail to gsdnet-request@listserv.icors.org if you would like added. You will then find the group in the left-hand column of your Facebook home screen.
4 Facebook Group: Cure Pompe Disease
This group was founded by Krystal Hayes. It is "to educate people on this very rare and deadly disease".
5 Pompe Disease - the Real Story
Ten years of Pompe Disease (1993-2003) from the perspective of one of the "patient pioneers", Kevin O'Donnell. Kevin is founder of GSDnet, the international mailing list for people interested in glycogen storage diseases (including Pompe Disease). His knowledge of Pompe Disease is profound, and his contributions to discussions are always welcome. Thanks, Kevin, for 10 years of your work, and counting...
6 Pompe Disease Entry on OMIM
OMIM (Online Mendelian Inheritance in Man) is a compendium of human genes and genetic phenotypes, edited at the Johns Hopkins University School of Medicine.
7 Pompe Disease Entry on ORPHANET
ORPHANET is a European portal for rare diseases and orphan drugs.
8 The Cure by Geeta Anand
The book that inspired the movie, Extraordinary Measures, starring Harrison Ford, Brendan Fraser, and Keri Russell, is the story of John Crowley, founder of Novazyme, a start-up biotech company that entered the race to develop a therapy for Pompe Disease. The driving force for John Crowley is the search of a cure for his two children, both suffering from Pompe Disease.
9 eLerarning Module
Learn about "the core concepts of Pompe's disease". This eLearning module is available at the University of Southampton, UK.
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Glycogen Storage Disease Network (GSDnet)

GSDNet is an unmoderated discussion list for all types of glycogen storage disease (GSD). The list is intended to be a resource and support network for individuals and families affected by one of the 11 types of GSD. Participation by medical and scientific professionals, and other relevant parties, is also encouraged.

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International Pompe Association
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