LATEST NEWS

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. 

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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.

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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.

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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.

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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).

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