Ahead of Rare Disease Day, we welcome Rachel Rimmer and Mark Telkman from Rare Autoinflammatory Conditions Community UK (RACC-UK) to illuminate the often-overlooked world of these chronic illnesses and how they differ from autoimmune diseases.
RACC-UK is a UK-based charity supporting individuals living with rare autoinflammatory conditions, their families, and carers. They work tirelessly to improve their lives through information, support, advocacy, working alongside healthcare professionals and informing policy.
Discover how RACC-UK creates a lifeline for patients facing isolation and empowers them to become active participants in their healthcare. Learn about their valuable resources and initiatives that make a real difference in the lives of those living with autoinflammatory conditions.
Join us as Rachel shares her poignant diagnosis journey in the search for answers. Despite symptoms from birth, it took over a decade for her to be diagnosed with Mevalonate Kinase Deficiency (MKD). We learn about this experience and how it led to advocacy and becoming the Director of RACC-UK.
This conversation is more than just a medical exploration; it's a call to action. We'll discuss the challenges of raising awareness, receiving a timely diagnosis, and ensuring a better future for all affected by these complex conditions.
If you enjoyed this episode, please remember to leave a review and subscribe wherever you listen to help more people find our peer support community. <3
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Join our Online Peer Support Community and Discord server here: https://discord.com/invite/dUean4vDcX All Links: https://linktr.ee/Joelvsarthritis
Watch The Chronic Pain Club Talk Show and these interviews LIVE on YouTube and join the conversation! DISCLAIMER: Please note that the host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others - their story is their own, and we cannot be held responsible for their views or recommendations. Everyone is unique - what works for one person may not work for another. Always consult your medical professionals.
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