3rd March 2026
VWMD recommendations for diagnosis and management resources
Resources available for individuals affected by VWMD focused on consensus recommendations for diagnosis and management of the condition.
Stay up to date
3rd March 2026
Resources available for individuals affected by VWMD focused on consensus recommendations for diagnosis and management of the condition.
3rd March 2026
We attended the Society for Endocrinology – British Endocrinology Society (SfE BES) conference.
3rd March 2026
Our next online meeting will be taking place on Thursday 26th March 11:30-13:00 (GMT – UK time).
27th February 2026
View a rare disease day focused illustration showing what equity means to individuals affected by rare disease.
26th February 2026
Genetic Alliance UK’s Rare Disease Day policy report presents the findings from our community consultation into what healthcare equity means for people living with rare conditions.
25th February 2026
A recently published news article discusses the importance of research for the progression of treatments for Rare Diseases.
25th February 2026
Our CEO, Sara, attended the Rare Disease Day 2026 Westminster Parliamentary Reception on 24th February.
24th February 2026
We have sent out the February edition of our monthly news round-up. This month we will be sharing about Rare Disease Day, our counselling service, lighting up our stained glass window and newborn screening updates.
24th February 2026
Our Research Summary for February is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials.
23rd February 2026
The open letter to Ionis is in response to the announcement regarding the opening of the Expanded Access Program (EAP) for zilganersen in the United States.
20th February 2026
Essex Neurology Network are creating a booklet to bring together the life-experiences of people in Essex who have neuro-conditions.
16th February 2026
We are sharing the ask our community for February. This month we’d like to find out about resources and information for newly diagnosed individuals and families.