We provide support and help for individuals and families affected by an ultra-rare condition – Glycogen Storage Disease (GSD). It primarily affects the liver and/or the muscles including the heart.
There are currently about 16 known GSD’s; most have sub variants and some have very small numbers of people affected. Incidence, numbers diagnosed and age of diagnosis vary enormously.
We provide both practical and emotional support across all GSD’s and their variants. AGSD-UK would like to see all people affected with GSD’s given the opportunity to lead full and productive lives.
In particular we:
- Operate as a patient and family contact and support group, providing information on request by phone or email.
- Develop and maintain the AGSD-UK website.
- Create and distribute relevant GSD information and resource material: leaflets, books, fact sheets and videos.
- Publish a regular magazine.
- Hold GSD specific courses, events and workshops.
- Host an annual conference.
- Protect and promote the best interests of those affected with a GSD through support, advocacy and signposting.
- Raise awareness and educate about living with GSD’s.
- Contribute to the advancement of treatments and cures through sponsorship of research, studies and trials.
- Act as a focus for educational, scientific and charitable activities related to GSD.
- Liaise and collaborate with other GSD associations around the world.
- Fundraise in order to improve the lives of the UK GSD community.