Dear [INSERT NAME OF MP/MSP/MS/MLA – you can find this on writetothem.com],
My name is [YOUR NAME] and I am a constituent in [INSERT CONSTITUENCY]. I have a rare autoimmune rheumatic disease (RAIRD), and I am writing to you because I am concerned about the care and treatment available to me, and others with rare diseases.
RAIRDs are a range of conditions where the body’s immune system damages its own tissues: these diseases can be life-threatening and significantly life-altering. Yet too often there are delays in diagnosis and treatment, and poor care coordination, which can significantly affect outcomes for people like myself.
There are over 7,000 rare diseases, which affect around 3.5 million people in the UK, but the NHS’s services are too focused on common conditions, despite the fact that rare diseases affect many people in the UK. People with RAIRDs are not receiving the care and treatment we need, and this has only worsened due to the pandemic.
The Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) is campaigning for improvements in the care and treatment of people living with these rare conditions. RAIRDA has recently released its Resetting the Balance policy paper, which outlines actions the government needs to take in order to improve care for rare diseases.
As my representative, I hope that you are committed to ensuring that people with rare diseases receive high quality care no matter where they live.
It would be great if you could Tweet your support for RAIRDA’s calls: will you help us #ResetTheBalanceforRAIRDs?
Further, if you are interested in advocating on behalf of your constituents with rare diseases in Parliament, RAIRDA would be delighted to meet with you to discuss how you can best support the work of the alliance. If this would be of interest to you, please contact Anna Coupland (firstname.lastname@example.org).
Please do keep me informed of any progress made. I look forward to your response.
[Insert Your Name]