Findacure’s Cambridge rare disease showcase.
AGSD-UK supported Findacure’s networking event on rare diseases in Cambridge, represented by Gemma Seyfang of the Pompe Support Team.
Help your child enjoy a hospital visit!
Families attending Great Ormond Street or Birmingham Children’s hospitals are welcome to come along to family days this autumn.
Netflix series “Diagnosis” refers to GSD.
A new series from Netflix, in which a doctor crowd-sources diagnoses for mysterious medical conditions, opens with a story mentioning GSD.
In Wales? Contact your Assembly Member.
AGSD-UK supports Genetic Alliance UK in establishing a Cross-Party Group in the Welsh Assembly to support patients with rare, genetic conditions.
New private DIY option for CK blood tests.
There is now a private option for Creatine Kinase (CK) blood tests, with blood taken yourself at home and posted to the lab.
Strategic development for growth, services and support.
In line with AGSD-UK’s strategic plan and succession planning, we are pleased to announce the appointment of a Chief Executive Officer.