This Rare Disease Day, RAIRDA is excited to launch our 2024 manifesto, which highlights our key calls for the next UK Government.
Our key calls are as follows:
1) Ensuring that rare diseases remain a priority, in a climate where there is an increasing focus on major conditions – people with RAIRDs must not be left behind.
2) A quality standard for rare disease – there is currently no tangible way to measure progress on the issues which matter most to people living with rare diseases, including RAIRDs. A quality standard will drive change, and systematically reduce inequalities.
3) Development of, and better support for, specialised networks. Specialised networks are an excellent way for health professionals to access the knowledge and expertise of tertiary and specialist centres, whilst also developing capability and capacity for more care and treatment to be carried out locally than would otherwise be the case.
Read the full briefing here for more information.