What’s happening in the world of muscle GSD.
PODCAST ABOUT CoRDS REGISTRY
17 April 2020
CoRDS launch a 28 minute podcast with Stacey and Andrew, talking about muscle GSD and the CoRDS Registry. Listen, and then join the registry, to help everyone but especially those yet to be diagnosed.
WALKING COURSE DATES
5 January 2020
Walking courses are planned for Wales (AGSD-UK) – 6-13 August, Germany (SHG) – 18-22 September, and provisionally USA (IamGSD) – adjacent to the AGSD US conference 11-12 September.
INFO ON COVID-19 CORONAVIRUS
19 March 2020
Many of us are feeling anxious as we navigate the uncertainty of COVID-19 (coronavirus). We share some information to help everyone with a muscle GSD maneuver through these difficult times.
NEW RESOURCE ON GENE THERAPY
22 December 2019
The American Society of Gene and Cell Therapy has launched a video of their webinar: “Gene Therapy: Yesterday, Today, and Tomorrow”. It is an interesting introduction to this important subject.
LAUNCHES FOR RARE DISEASE DAY
29 February 2020
We have three amazing launches for Rare Disease Day – a brand new patient registry for North America, a “Get Moving” campaign and an offer of T-shirts, sweatshirts and goodies (closes 23 March).