In 2023, RAIRDA is asking you to take action to raise the profile of rare autoimmune rheumatic diseases.
Why is this important?
Currently, there are 3.5 million people in the UK living with around 7,000 rare diseases. Individually, the conditions are rare, but collectively, they affect a significant proportion of the population.
Yet RAIRDA’s Resetting the Balance report has shown that people with rare autoimmune rheumatic diseases (RAIRDs) aren’t receiving the care and treatment they need. Delays in diagnosis and poor care coordination can have a significant effect on outcomes.
This year, RAIRDA wants parliamentarians to take notice of, and action for, people with RAIRDs. RAIRDA, as part of the Independent Advisory Group to the forum on the UK Rare Diseases Framework, is calling for the development of a rare disease quality standard, which would drive improvements in care, address existing gaps in nation specific action plans, and establish actions for commissioners and healthcare providers.
How can you help?
We are calling on our supporters living with RAIRDs to email their MP, MLA, MSP or MS, to ask them to advocate for people living with rare disease.
This is an opportunity to add your voice to the call for Government to address the disparities in care and treatment faced by people with RAIRDs and rare diseases in general. By promoting RAIRDA’s asks, you can join us on the journey towards making the system fairer for people living with rare disease.
How do I send my letter?
The website WriteToThem makes this easy: you can go onto the site, find your representative’s contact details, paste the letter in, and WriteToThem will send your message for you.
We have drafted a template letter that you can use or amend, or you can draft your own.
Please also feel free to email email@example.com if you need any further assistance with sending your letter.
Keep in touch
If you would like to sign up to RAIRDA’s mailing list, email firstname.lastname@example.org to be added. You can contact RAIRDA at any time to ask to be removed from the mailing list, and we will only store your email address for the purposes of sending you information about our work.