Disjointed care in rare disease is a serious issue that leads to people being left overwhelmed when trying to manage their conditions by themselves. Sometimes with terrible consequences. We welcome the acknowledgement of this by the UK Government but we need more action #RareDisease

Lucy sits down with Dr Claire Ashley author of The Burnout Doctor, to explore what burnout really means, why it happens, and how we can begin to heal from it. 🫶🏻

Claire shares her personal journey of recovery and the inspiration behind her book. 📖

Listen now rdpodcast4medics.buzzsprout.com

1 in 17 people in the UK will be affected by a #RareDisease. Their stories are often invisible and go untold. We're changing that 💛

The #FridgeDiaries film launches next week. Learn more about the I am number 17 campaign at: iamnumber17.org.uk #IAmNumber17

🎧 For the latest episode of The Rare Disease Podcast for Medics, we're sharing the presentation Lucy delivered at the @softuk.bsky.social conference. Lucy talks about the work of Medics for Rare Disease and our vision of equitable healthcare for everyone. 🤝 Listen now rdpodcast4medics.buzzsprout.com

For this week's episode of the podcast, Lucy chats with Nikki Speed from SUDC UK 🎧 Listen now on Spotify/Apple Podcasts!
rdpodcast4medics.buzzsprout.com

Fact for Friday! 💡Yesterday was world Sickle Cell day! Check out the main symptoms and causes of Sickle Cell ⬇️

🎧 In this deeply personal episode of the podcast, Elle Daniel shares her extraordinary journey of donating part of her liver to her daughter who has a very rare condition called CDG.

👂 Listen to the podcast now in full!

rdpodcast4medics.buzzsprout.com

🎙️ New Podcast Episode!

Lucy sits down with Isobel, Philandra, and Vicki from the Genomics Medicine Service Alliance (GMSA) to chat all about their webinar focusing on genomics in primary care.

Listen here! > rdpodcast4medics.buzzsprout.com
Sign up to the event here > www.m4rd.org/event/genomi...

Thanks to everyone who came along to the Pulse 365 event last month! 😀

336 GPs took part in the training where Lucy spoke about what is meant by the term ‘The Diagnostic Odysssey’ and how to recognise the red flags of #raredisease.

Thanks to everyone for showing up ⬆️ what a fantastic turnout! 😍

From the runway, to real life! 👑 for this week’s episode of the podcast Lucy shares how iconic #RuPaul quotes straight from his book have helped her through life both inside and outside of Medics for Rare Disease and how they can help you too! Listen here rdpodcast4medics.buzzsprout.com

Podcast time! 🎧 Lucy and Emily are back on to chat about the doc ‘It’s Not Yet Dark’ - the story of Simon, a young filmmaker who becomes paralysed from Motor Neurone disease but goes on to direct an award-winning film through the use of his eyes.

Listen now rdpodcast4medics.buzzsprout.com

NEW PODCAST EPISODE!

Lexi found out that she was intersex when she was an adult. She has a condition that means she has three sex chromosomes (XXY) which causes many different health problems, in addition to variations of sexual characteristics.

Listen now! rdpodcast4medics.buzzsprout.com

Fact for Friday! 💡Over 3.5 million people in the UK are affected by a #raredisease. This is roughly the same number as those with a current or previous cancer diagnosis. 😯

Learn more for free by taking our Rare Disease 101 module available on learn.m4rd.org! 👩‍🎓