15th April 2014

International Pompe Day

Press Release

 

Pompe Update

Healthcare at Home

Deliveries Statement

 

GSD Giant 2014 

Annual cyclo-sportive.

7th September 2014

Goodwood, West Sussex

104, 76, 44 mile options

 

GSD Giant website
  

 

Links to GSD related websites

For Type II Pompe links see the Pompe Pages.
For Type I Von Gierke and Type V McArdle links see their respective sections of this site.
Please click here to report broken links.


 

Information

CLIMB Children Living with Metabolic Diseases - the National Information Centre for Metabolic Diseases
www.climb.org.uk

OMIM On-line Mendelian Inheritance in Man is a searchable database on all of the known genetic diseases. A lot of information but very technical.
www.ncbi.nlm.nih.gov

The Muscular Dystrophy Association in Australia has information about several types of GSD.
www.mda.org.au

Diseases of the Liver has information about the liver-related forms of GSD.
www.cumc.columbia.edu

Children's Liver Disease Foundation - a useful website for liver diseases
www.childliverdisease.org

Genetics Education Center at Kansas University A good collection of educational resources for genetics.
www.kumc.edu


 

Support

Contact a Family - for families with disabled children
www.cafamily.org.uk

The Muscular Dystrophy Campaign in the UK works with the muscle-involved types of GSD.
www.muscular-dystrophy.org

Medic Alert Foundation - identification system for individuals with hidden medical conditions.
www.medicalert.org.uk


 

Associations for Glycogen Storage Disease around the world

France - Association Francophone des Glycogénoses
www.glycogenoses.org

Germany - Selbsthilfegruppe Glykogenose Deutschland e.V.
www.glykogenose.de

Italy - Associazione Italiana Glicogenosi
www.aig-aig.it

Scandinavia - Scandinavian Association for Glycogen Storage Disease - (SAGSD)
www.sagsd.org

Spain - Asociacion Española de Enfermos de Glucogenosis (A.E.E.G.)
www.glucogenosis.org

USA - Association for Glycogen Storage Disease
www.agsdus.org