Invitation to young people with a rare condition
The Royal College of Paediatrics and Child Health invites young people to network with each other, support groups, medical professionals and policy makers.
More personal stories wanted
AGSD-UK is appealing for more personal stories from all the GSDs. There is great value in the the stories for those who are newly diagnosed.
Camps available: Children’s Liver Disease Foundation
Dates for 2019 – families with children affected by hepatic GSDs can access children’s camps through the Children’s Liver Disease Foundation.
Gene therapy updates due at our 2019 conference
Dr Guiseppe Ronzitti, a group leader at Généthon, confirmed to speak on gene therapy developments for GSDs at our 2019 conference.
Save the date – IGSD2019 conference, Brazil
The 5th International GSD Conference will be held in Porto Alegre, Brazil, over 14 to 16 November 2019. Registrations now open!
Bladder control survey for GSD2 and GSD5
Manchester Metropolitan University is investigating how bladder problems affect quality of life in neuromuscular conditions, including Pompe and McArdle’s.