Steve Wills from Indiana, USA, was diagnosed with McArdle disease (GSD5) when he was 8. He had come to think he was not like others with McArdle’s…
Avalglucosidase alfa reaches its first important regulatory milestone
Help fundraise for AGSD-UK using AmazonSmile for all Amazon purchases
Julie Garfield has been making bag tags for Pompe children to go back to school.
AGSD-UK working with NICE towards approval for new treatment for Pompe disease.
The latest edition of our magazine Glisten is here, dated August 2020. Packed with news, reports, research and fundraising ideas.
A survey looking at the Covid-19 impact on wellbeing in families of children with rare neurodevelopmental and genetic disorders study
Pompe Support Team’s Medical Overview leaflet is now being used in Australia.
Audentes is now enrolling patients with late-onset Pompe disease in the Phase 1/2 clinical trial.
AGSD-UK are offering a free online mindfulness course to those working with or affected by GSD.
This webinar will explore educating physicians in rare diseases. It is open to all.
Metabolic Disorders Awareness Week runs from 06.07.20 – 12.07.20. see how you can be part of it.
Mental health considerations during the COVID-19 pandemic and how physical activity can help.
Maggie Lilburn dies after long illness
How to wear a face mask correctly
MetabERN has extended its survey deadline to June 21st 2020
For 2020 NORD plans to hold its annual patient and family forum as a virtual event. It will be on 18 and 19 July
AGSD-UK has appointed Julie Jackson to a temporary post to address a large increase in requests for help with state benefits.
Dr. Weinstein, long-time champion of improved diagnosis and treatment for hepatic GSDs due to move to Passage Bio as VP.
Survey on rare disease patients’ experience of COVID-19 will enable EURORDIS to measure the effect on lives and inform decision-makers.
New born screening has long been championed by AGSD-UK. Now you have an opportunity to support a larger national campaign.
IamGSD has launched a survey of people affected by muscle GSDs and how they are being affected by the COVID-19 pandemic.
Mendelian, working to reduce diagnostic delay, and thus improve quality of life, in rare diseases including glycogen storage disease.
During 2019 the rate of new registrations with AGSD-UK increased by 26% over the previous year. We consider the reasons why.
The GSD3 get-together with the CATS at Cudworth Village Hall, on 14 March, has been postponed until later in the year.
The family day at the Evelina Hospital has been postponed from 7 March to later in the year, due to health concerns.
IamGSD has a limited-time opportunity to order McArdle’s “Second Wind” T-shirts, sweatshirts and hoodies. Order by 23 March.
Rare Disease Day, 29th February, we celebrate everyone with rare conditions. Today Lauren is special as it’s also her 20th birthday.
Countdown to Rare Disease Day 2020 on 29th February. We can support you to give a talk to raise awareness of GSD.
The latest edition of our magazine is out. Glisten Spring 2020 is here, packed with news, reports, announcements and information.
Coming up on Saturday 14 March is another get-together for those with GSD3. Bring children, family and friends.
Countdown to Rare Disease Day on 29 February. Act now, get involved, it’s easy.
Countdown to Rare Disease Day on 29 February. Findacure’s “Drug Repurposing for Rare Diseases” conference returns for its 7th year!
2020 is a leap year and Rare Disease Day falls on… Friday 29 February. We are counting down to the day!
A trial of a new treatment for GSD2 has been halted. VAL-1221 was delivered intravenously in late-onset Pompe patients.
Happy New Year from AGSD-UK to members and friends around the world. Here’s to great progress for GSD in 2020.
The AGSD-UK board of trustees announces that Neil Bradbury has stepped down from his role as Chief Executive Officer.
NICE are looking for lay members to join their highly specialised technologies evaluation committee.
AGSD-UK supports the Eurordis-led initiative of a survey of care in rare diseases across Europe. It takes just 10 minutes!
Frank and Irene Green from Altrincham for years have decorated their home with festive lights, this year raising money for AGSD-UK.