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.
On this UN International Volunteer Day of 5th December, AGSD-UK asks “Could you volunteer to join our web team?”
Rowena Barnard has taken on managing AGSD-UK’s social media, on a volunteer basis, and it has sprung into life.
Gary Thompson sends some photos he took of the fun and the business at our Annual Conference and AGM over 5/6 October.
We mark the passing of Dr Clive Tonks in his mid-eighties. He was a past trustee and committee member of AGSD-UK.
New information and videos – past, present and future of gene therapy from the American Society for Gene and Cell Therapy.
A painting of the Pembrokeshire coast, by Edd Bush, was presented to Andrew Wakelin at our conference in October.
For the AGSD-UK Family Day at Great Ormond Street, lots of families came along and friendships and support networks were created.
Neil Bradbury, our newly appointed Chief Executive Officer, introduces himself to our membership, and gives an insight into his plans.
Development of services from Genomcs England continues apace, with the launch of a trial of whole genome sequencing for newborn babies.
Plenty of medical and technical words are used in our website, but help is at hand with our on-line interactive glossary.
Ismail lives with Infantile Onset Pompe Disease. Aged 19, his abiding passion is football. He plays using an adapted wheelchair.
The 5th International GSD Conference (IGSD2019) takes place in Porto Alegre, Brazil, from 14 to 16 November 2019.
Minister at Dept. of Health and Social Care announces a national conversation to understand how to improve care for rare diseases.
Southeastern Trains are planning to trial a scheme next year to help passengers with hidden disabilities, which could include GSD.
Three trustees retired at the AGM, so the board is now down to four members and it is actively seeking new trustees. Can you help?
A phenomenon identified on AGSD-UK’s walking courses has been presented in a poster at the World Muscle Society Congress.