Australian Pompe's Association (APA)
Communication of information relating to the treatment of Pompe Disease firstly and to Glycogen Storage Disease secondly. Establishment of a responsible body for the acknowledgement by Australian and overseas medical authorities and pharmaceutical companies for members to receive advice on the progress of new therapies against Glycogen Storage Disease. Participation by members in treatment and clinical trials of medicine against Pompe’s Disease. Founding of support group of “Friends” to expand the involvement of individual, community and government assistance of physical, emotional and financial aid to members. To make representation to all known Drug Houses and pharmaceutical companies in Australia and overseas to obtain supplies of drugs pertinent to the treatment of Pompe Disease. To make representation to the Australian Medical Association and the Australian Government Department of Health to enable drugs available either for testing or for clinical trials and/or treatment to be cost free to members.
To be a charitable foundation to raise tax deductible funds to help support our members and to ensure the Australian Pompe’s Association is sustainable.- Website
- http://australianpompe.com/
- Sector:
- Not For Profit
- Type
- Health Consumer
- Regions
- Australia
- Medical Conditions
- Glycogen storage disease type II
- Related Topics
- Rare Disease
|
|
https://www.facebook.com/AustralianPompeAssociation |
|---|---|
|
|
https://twitter.com/australianpompe View Feed |
|
YouTube |
https://www.youtube.com/channel/UCi5yFN bgdvvmQs8cWNQmBA |
|
Google Plus |
http://google.com/+Australianpompes |
