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The Rare Autoimmune Rheumatic Disease Alliance

Email your local MP to speak up for people with rare autoimmune rheumatic conditions

In the light of the new Parliament, RAIRDA will continue to arrange meetings with, and promote our asks to, Members of Parliament and policymakers. 

RAIRDA’s key asks 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. 
  1. 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. 
  1. 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.

You can read our 2024 manifesto to learn more about our asks for the government. 

By sharing your voice and your experiences with your local MP, you help us keep RAIRDs on the national agenda and drive real change for the community. 

Simply click this link, and WriteToThem will help you send a message directly to your newly elected local MP. 

What can I include in my message?

  • Your MP will want to hear about your own experience of living with a RAIRD – perhaps you would like to share your experiences with diagnosis, care and treatment for your RAIRD, or anything else about your personal RAIRD experience. You can also share details about RAIRDA’s manifesto, and our key asks. 
  • Ask your MP to meet with you, and/or RAIRDA, to discuss how they can better support people living with RAIRDs. 
  • You could also ask your MP to pass on your concerns to the minister responsible for rare disease, Andrew Gwynne (Minister for Public Health and Prevention). 

If you would like to include RAIRDA in your supporter action, send an email to rairdauk@gmail.com, and let us know that you’ve contacted your local MP. We will be happy to support you with any further contact with the MP, if this is of interest.