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).