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National 3 Peak Challenge in 24 hours for Hugo.
At the end of April 2021 a small team will be #HikingForHugo and taking on the National 3 Peaks Challenge in 24 hours.
Kieron Stubbings raises over £6000 for AGSD-UK!
Kieron Stubbings has completed the 2020 London Marathon virtually to fundraise for AGSD-UK
Ann Phillips, 1934–2020, co-founder of AGSD-UK.
We are sad to report that AGSD-UK co-founder Ann Phillips has passed away shortly after contracting COVID-19 in her care home. She was 86.
Transatlantic diagnosis correction, after 29 years!
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…
EMA accepts regulatory submission for avalglucosidase alfa.
Avalglucosidase alfa reaches its first important regulatory milestone
Support AGSD-UK with AmazonSmile.
Help fundraise for AGSD-UK using AmazonSmile for all Amazon purchases
Back to school bag tags.
Julie Garfield has been making bag tags for Pompe children to go back to school.
AGSD-UK attend NICE scoping workshop.
AGSD-UK working with NICE towards approval for new treatment for Pompe disease.
Glisten August 2020 is out!
The latest edition of our magazine Glisten is here, dated August 2020. Packed with news, reports, research and fundraising ideas.
COVID-19 impact survey for families.
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 leaflet used in Australia!
Pompe Support Team’s Medical Overview leaflet is now being used in Australia.
Audentes Pompe Gene Therapy Trial News.
Audentes is now enrolling patients with late-onset Pompe disease in the Phase 1/2 clinical trial.
Free Online Mindfulness Course.
AGSD-UK are offering a free online mindfulness course to those working with or affected by GSD.
Open Health Webinar – Educating Physicians.
This webinar will explore educating physicians in rare diseases. It is open to all.
Metabolic Disorders Awareness Week.
Metabolic Disorders Awareness Week runs from 06.07.20 – 12.07.20. see how you can be part of it.
Mental health and motivation for exercise.
Mental health considerations during the COVID-19 pandemic and how physical activity can help.
Maggie Lilburn
Maggie Lilburn dies after long illness
Coronavirus: How to wear a mask.
How to wear a face mask correctly
MetabERN survey – deadline extension!
MetabERN has extended its survey deadline to June 21st 2020
NORD plans Virtual Forum – 18 and 19 July.
For 2020 NORD plans to hold its annual patient and family forum as a virtual event. It will be on 18 and 19 July
Benefits Advisor joins the AGSD-UK team.
AGSD-UK has appointed Julie Jackson to a temporary post to address a large increase in requests for help with state benefits.
Move for USA-based GSD expert Dr. David Weinstein.
Dr. Weinstein, long-time champion of improved diagnosis and treatment for hepatic GSDs due to move to Passage Bio as VP.
Rare Barometer survey of COVID-19 in rare disease.
Survey on rare disease patients’ experience of COVID-19 will enable EURORDIS to measure the effect on lives and inform decision-makers.
Support the call for new born screening.
New born screening has long been championed by AGSD-UK. Now you have an opportunity to support a larger national campaign.
Survey of muscle GSDs and COVID-19 issues.
IamGSD has launched a survey of people affected by muscle GSDs and how they are being affected by the COVID-19 pandemic.
Mendelian – reducing diagnostic delay in GSDs.
Mendelian, working to reduce diagnostic delay, and thus improve quality of life, in rare diseases including glycogen storage disease.
AGSD-UK new registrations up by 26% in 2019.
During 2019 the rate of new registrations with AGSD-UK increased by 26% over the previous year. We consider the reasons why.
Newsflash – GSD3 get-together postponed!
The GSD3 get-together with the CATS at Cudworth Village Hall, on 14 March, has been postponed until later in the year.
Newsflash – Evelina family day postponed!
The family day at the Evelina Hospital has been postponed from 7 March to later in the year, due to health concerns.
IamGSD offers McArdle “Second Wind” T-shirts.
IamGSD has a limited-time opportunity to order McArdle’s “Second Wind” T-shirts, sweatshirts and hoodies. Order by 23 March.
Rare Disease Day – and happy 20th Lauren.
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: 1
Countdown to Rare Disease Day 2020 on 29th February. We can support you to give a talk to raise awareness of GSD.
It’s out… Glisten Spring 2020 is here!
The latest edition of our magazine is out. Glisten Spring 2020 is here, packed with news, reports, announcements and information.
GSD3 get-together – 14 March.
Coming up on Saturday 14 March is another get-together for those with GSD3. Bring children, family and friends.
Countdown to Rare Disease Day 2020: 2
Countdown to Rare Disease Day on 29 February. Act now, get involved, it’s easy.
Countdown to Rare Disease Day 2020: 3
Countdown to Rare Disease Day on 29 February. Findacure’s “Drug Repurposing for Rare Diseases” conference returns for its 7th year!
Countdown to Rare Disease Day 2020: 4
2020 is a leap year and Rare Disease Day falls on… Friday 29 February. We are counting down to the day!
Valerion’s trial of therapy for Pompe stopped.
A trial of a new treatment for GSD2 has been halted. VAL-1221 was delivered intravenously in late-onset Pompe patients.
Happy New Year 2020!
Happy New Year from AGSD-UK to members and friends around the world. Here’s to great progress for GSD in 2020.
Neil Bradbury has stepped down from role of CEO.
The AGSD-UK board of trustees announces that Neil Bradbury has stepped down from his role as Chief Executive Officer.