PREVIOUS NEWS STORIES
Here we archive news stories which have appeared in the news feature on our home page.
Rare Disease Day
Learning on a walking course in California
Please refer to the vaccine distribution plan for your country/local region. To the best of our knowledge, there is no reason why COVID-19 vaccines should cause any particular issue to someone with a muscle GSD. Please consult your primary physician for individual guidance.
WALKING COURSE DATES FOR 2020
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.
NEW COMMENTARY ON CENTRES OF EXCELLENCE
1 March 2018
A Centre of Expertise represents the most expansive platform to provide patients with McArdle disease current best practices that encompass thorough assessments, accurate diagnostic methods, relevant information and guidance, multidisciplinary support and an ongoing interface between primary and specialist care.
“Centre of Expertise: Comprehensive Care for Patients with McArdle Disease”,
Journal Rare Disorders: Diagnosis & Therapy 2018, Vol.4 No.1:4.
JOIN THE CORDS REGISTRY
IamGSD would like everyone with a muscle GSD to join the CoRDS Registry which has a special section for us (those in Europe can use the Euromac Registry). Please read about CoRDS, listen to the podcast and then join the registry on-line.
WALKING WEEK 2019
16 April 2019
The 6th annual walking week will be held Monday 20 to Sunday 26 May 2019, encouraging us all to get moving, raise awareness and maybe even raise some funds.
RESEARCH RESULTS AWAITED
28 February 2018
During 2018 we are expecting the results of three trials to be published - the ketogenic trial in Germany, the Triheptanoin trial in Denmark and France, and the Sodium Valproate trial in Denmark and the UK.
GLOBAL WALKING WEEK 2020
30 November 2019
The 7th annual Global Walking Week will be held Friday 16 to Saturday 22 May 2020 inclusive, encouraging us all to get moving, raise awareness and maybe even raise some funds.
IGSD2019 BRAZIL ANNOUNCED
2 March 2019
The next major international GSD conference has been announced for Brazil in 2019. Watch out for more info.
WALKING COURSE DATES
11 February 2018
The Walking Course in Wales this year will be held over 21 to 28 August and the Children & Parents event will be 17 to 20 August. The location will be the Brecon Beacons National Park in South Wales.