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The Rare Autoimmune Rheumatic Disease Alliance

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Share your story

If you or someone you know is living with a rare autoimmune rheumatic disease, we’d love to hear from you.

Living with a rare disease can often be an alienating experience and stories like yours can provide support and information for countless others going through a similar experience. Beyond this, your story can help raise awareness of the experiences of people living with RAIRDs to ensure rare diseases remain on the public and political agenda. 

Please get in touch with us if you would like to share your story or would like some more information, and we will be very happy to help you.

There are 2.5 million people worldwide who are living with scleroderma, including around 19,000 within the UK.

Source

SRUK website

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If you’d prefer to email in your story, please write to rairdauk@gmail.com

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RAIRDA is calling on you to raise the profile of rare autoimmune rheumatic diseases in Parliament. Send our template letter to your local representative today and help #ResetTheBalanceForRAIRDs. rairda.org/get-involved/2…

It's great to see that the 2023 Rare Diseases Action Plan references the recommendations made in RAIRDA's #ResettingTheBalance report, and that it highlights the work being done on a quality standard for rare disease by the IAG to the UK Rare Diseases Forum. twitter.com/DHSCgovuk/stat…

Our co-chair @lanyon_peter attended the #RareDiseaseDay parliamentary reception yesterday. It was a great opportunity to meet with others from the rare disease community, and to hear from @GeneticAll_UK, @LizTwistMP and @Helen_Whately. @MBythell pic.twitter.com/gPRAFGNL51

Take action this #RareDiseaseDay by contacting your parliamentary representative to ask them to advocate for people with RAIRDs. Together, we can #ResetTheBalanceForRAIRDs. rairda.org/get-involved/r…

This #RareDiseaseDay, read about RAIRDA's plan for #ResettingTheBalanceForRAIRDs, and how you can get involved rairda.org/rare-disease-d…

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