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. 

WALKING WEEK
2019

16 April 2019

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.

RESEARCH RESULTS AWAITED

28 February 2018

The next major international GSD conference has been announced for Brazil in 2019. Watch out for more info.

IGSD2019 BRAZIL ANNOUNCED

2 March 2019

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.

WALKING COURSE WALES DATES

11  February 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.

NEW COMMENTARY PUBLISHED ON CENTRES OF EXPERTISE

1 March 2018