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
You can see our CEO, Lucy McKay, in action today on BBC iPlayer via this link. It is a pleasure to support our amazing Ambassadors in their advocacy activities and we're so grateful to Charlotte for highlighting our collaborative work #RareDisease www.bbc.co.uk/iplayer/epis...
Charlotte explains that she nearly died because of a lack of communication and disjointed care for her rare condition. She is now using her experience to work with us to support doctors to provide excellent rare aware care. Find out more here
www.bbc.co.uk/iplayer/epis...
#RareDisease #RareAware
Our Ambassador, Charlotte Chapman-Hart, has been featured today in an article on the BBC. She talks about her misdiagnosis and how poor management of her care has drastically impacted her life.
Nobody believed that she didn't have an eating disorder...find out more
www.bbc.co.uk/news/article...
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
Learn from an expert community! 😍 Have you ever heard of a Delphi study and not quite sure what it entails? 🤔
Come along to this webinar which will provide all the training you need on how they are run!
📅 Wednesday July 16th
🕰️ 3-4.30pm
📍 Online
Register now www.eventbrite.co.uk/e/introducti...
Meet Megan Pullein! 😀 Our new Research Project Manager.
Get to know more about our newest member of the team in her blog which includes the exciting work she’ll be doing with us on the RDI Lancet Commission. 😍 Welcome Megan!
www.m4rd.org/2025/07/08/m...
We signed the #IAmNumber17 open letter to the government, calling for greater awareness and support to ensure people with rare diseases receive the care and understanding they deserve and need. Together, we can make a difference. Read the full letter here: iamnumber17.org.uk
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
Our ambassador Layan was at the House of Lords last week!
She went along to talk about the NHS Race and Health Observatory paper for #SickleCell day.
Well done Layan! 👍 😍
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 ⬇️
Our Mission and Vision! 💡 Having a clear mission and vision helps us grow with purpose and ensures everything we do is a step towards meaningful change. 🤝
Our amazing team! 😍
Last week all of the staff and trustees came together for a special meeting. It was a chance to step back, reflect, and look ahead 🙌
We spent the day sharing ideas 💡 aligning goals, and shaping the future of our work together.
🎧 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
Feedback from the Pulse365 event! Thanks to everyone who came along to hear Lucy's talk!
Thank you to Dr Claire Ashley for an excellent session at the Rare Disease Innovation Exchange organised by @alexionpharma.bsky.social 👍
She reminded us that we are stronger together and if we want more visibility we need to boost each other up in the places they're going to be seen. #RareDisease.
🎙️ 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! 😍
Last week a landmark resolution on rare disease was adopted at the 78th World Health Assembly! This marks a significant step toward global health equity and inclusion.
Read more here! www.m4rd.org/2025/05/27/a...
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
Tomorrow, we release a brand-new episode of the Rare Disease Podcast for Medics! 😍 Lucy will share how iconic #RuPaul quotes straight from his book have helped guide her through life both inside and outside of the medical world.👩⚕️
Keep a look out on #Spotify and #ApplePodcasts!
TOMORROW! Hear Lucy talk at the Pulse Virtual May: Rare Diseases online event! Lucy’s talk will take place after the chair’s opening remarks at 9.30am. Sign up now and gain up to 5 CPD hours for your portfolio. 🙌
events.cogora.com/pulsevirtual...
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
Over on Instagram we're running Test for Tuesday. The question....
What percentage of rare diseases have a genomic origin?
Provide thoughts below!
We support #Resolution4Rare at the next World Health Assembly...Rare diseases: a global health priority for equity and inclusion" - this represents an opportunity to make a meaningful difference in the lives of those living with these conditions, to leave no one behind @rarediseasesint.bsky.social
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! 👩🎓
Today Helen is over at the @rcpch.bsky.social conference! If you see her make sure you say hello! #RCPCH2025
