he UK Rare Diseases Framework lists the priorities and underlying strategic themes that detail how the UK will address the challenges faced by those living with rare diseases.
The UK Rare Diseases Framework outlines 4 high-level priorities for rare diseases in the UK over the next 5 years:
- helping patients get a final diagnosis faster
- increasing awareness of rare diseases among healthcare professionals
- better coordination of care
- improving access to specialist care, treatments and drugs
Nation-specific action plans will be developed within 2 years of the Framework publication that will detail the steps each administration will take to meet the shared priorities of the Framework.
The UK Rare Disease Framework can be downloaded HERE
The Genetic Alliance UK, Rare Disease Experience Report which was published in 2020, can be downloaded HERE
The Westminster All Party Parliamentary Group on Rare Disease and Undiagnosed Conditions
All Party Parliamentary Groups (APPGs) are informal, cross-party interest groups of MPs and Peers interested in a particular issue. APPGs do not have any power to make laws and are not funded by Parliament. There is a great number of APPGs, covering many and diverse fields such as health, education, transport, defence, finance, the media and sports.
You can find out the key areas that this group from Rare Disease and Undiagnosed Conditions has focused on so far on the Genetic Alliance website HERE