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McArdle’s service seeks a Clinical Fellow
The McArdle disease and related disorders service, National Hospital for Neurology and Neurosurgery in London, is recruiting a Clinical Fellow.
Amici! 101 Tips for Pompe now in Italian
Congratulations to Martina on her degree in translation. Her final project was translating 101 Tips for Pompe into Italian.
International sales for the AGSD-UK recipe book
AGSD-UK has an international reputation, so we were not totally surprised by an order from Saudi Arabia for our recipe book.
Come, join, meet, share… International Pompe Day
Come and join us at one of five venues to help celebrate International Pompe Day, Friday 15 April 2019.
Naidex exhibition will focus on staying independent
Free exhibition of aids and equipment to run again in 2019, at the NEC, Birmingham, 26 & 27 March.
Promising initial results in gene therapy trial
Dr David Weinstein reports rewarding preliminary results from the first ever gene therapy trial in a Glycogen Storage Disease.
Walking course announced
The 9th year of the “Walking with McArdle’s” course is to be held over 19 to 26 July 2019.
It’s not fake news!
58% of respondents to our 2018 survey said the AGSD-UK web site is their main source of information about GSD.
Project JOGLE
That is John O’Groats to Land’s End! Lucy Wright cycled it over 13 days in late July early August 2018.
2019 calendar – great gift and raise funds
These calendars make a perfect yet useful gift, promote our cause, and raise funds to support the work of AGSD-UK.
Resistance training aids McArdle’s
A case report from the national McArdle Clinic highlights the benefits achieved through strength training with a local personal trainer.
Nutrition in McArdle’s – international workshop
The future of nutrition for McArdle disease is the subject of an international workshop to be hosted in London by IamGSD and CNMD.
GSD Kids Camp: Can we do this next year?
AGSD-UK partnered with Over the Wall kids camps in October 2018 to take 6 families to Whitemoor Lakes Adventure centre.
Walking course heroes
12 people with McArdle’s, from 8 countries and aged up to 74, made the summit of Pen y Fan on course in Wales.
Very happy Family Day at GOSH
Ten families joined the Family Day at Great Ormond Street Hospital in October 2018, and didn’t want to go home.