UK Rare Diseases Action Plans update

In 2021 the UK government announced a new framework to raise awareness of rare diseases, speed up diagnosis and improve care and treatment.

The UK Rare Diseases Framework set priorities across England, Wales, Scotland and Northern Ireland including:

1) Helping patients get a final diagnosis faster
2) Increasing awareness of rare diseases among healthcare professionals
3) Better coordination of care
4) Improving access to specialist care, treatments and drugs

DC Action welcomed this new framework and hopes it will pave the way for new research breakthroughs and better access to care for people with rare conditions, including Dyskeratosis Congenita and Telomere Biology Disorders , across the UK.

You can see the full framework here:

Rare Diseases Action Plans
Rare Disease Action plans for England, Northern Ireland, Scotland and Wales were published in 2022

You can see updates on 2022 completed actions and the action plans for 2023 and beyond here:


Northern Ireland


See also