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

If you're at the @rcpch.bsky.social conference in Glasgow, keep a look out for our Training Programme Manager Helen in her Medics for Rare Disease stripy socks! 🥰 Helen always loves a good chat so if you're around, go and have a chin wag!

Helen took a trip over to Edinburgh yesterday with not one, but two Medics for Rare Disease Ambassadors, Zainab and Asia for the #RareDisease Day reception. 🙌 It was lovely for them to hear about experiences living with rare conditions and connect with others in the space!

This notification just came in from #Buzzsprout! 10,000 downloads! 😍 It's so amazing how much our #podcast has grown over the last few years. Thank you to everyone for listening in and supporting what we do. The new season will launch next month! Catch up on previous episodes below. 👍

Just in! Our new pin badge!

We’re still looking back on all the amazing photos you took on Rare Disease Day and so proud of everyone for taking part! 🥰 Here’s a snap of Helen and Lucy when they visited parliament last month where they met Okike from the BPSU! What a fab day 🥰

Congrats to Samantha McBride and her volunteers @uofglasgow.bsky.social medical genetics for putting on a fab charity gig last month to raise money for us! 😍 They managed to raise £550! Massive well done and huge thanks to you guys and all of the bands for making it happen! 🥰

Lucy and Jo had a great day out in Stoke-on-Trent attending the Living Well symposium hosted by the fabulous Kirsty Hoyle and the Metabolic Support team! Also in attendance were three of Medics for Rare Disease’s ambassadors Beth Meek, Zoe Morrison and Sophie-Mira R! #LivingWell

Have you ever felt unseen as a person impacted by rare disease? We hope this gallery featuring just some of the pictures from the NHS on Rare Disease Day will give you hope. Listen - Learn - Advocate (repeat) #ShowYourStripes #RareDisease #ThinkRare www.m4rd.org/2025/03/04/r...

This is a beautiful way to raise awareness by @orrax.bsky.social . We love it! #ShowYourStripes

Our CEO's MP - Mr Freddie van Mierlo - was showing his stripes today in support of people living with rare conditions in #RareDiseaseDay #ShowYourStripes

Thank you to @maxwilkinson.bsky.social for showing his support for the Rare Community this #RareDiseaseDay. Approx 6% of the population live with a rare condition #ShowYourStripes

Dr Emma Huskinson - featured in the @telegraphnews.bsky.social today about the Red Flags of Rare Disease study. Innovation in diagnostics & treatment march on healthcare professional training has been left behind. HCPs need to know when & how to suspect undiagnosed rare conditions #ShowYourStripes

Thank you to @kingshealth.bsky.social for raising awareness of the #RareDisease A lack of healthcare professional awareness of the impact of having a rare condition is one of the biggest challenges people face. We need our HCPs to #ThinkRare so that they can provide excellent care #ShowYourStripes

It's Rare Disease Day. Over 350 million people live with a rare condition globally. But rare disease is poorly taught about in medical education leaving doctors unable to support their patients. So we are raising awareness amongst healthcare professionals #ShowYourStripes

Our lovely ambassador Charlotte Chapman-Hart is excited about our #ShowYouStripes campaign! 😍 Charlotte explains how you can play your part on the day!!

What does #PatientAdvocacy mean to you? A huge thank you to @medicsforrare.bsky.social @oxfordrarediseasesociety @thesherringtonsociety I hope today was beneficial to Medical Students #AutoinflammatoryAware #RareDisease

There's just ONE week to go until Rare Disease Day! Get your best pair of stripey socks out, take a snap and #ShowYourStripes for Rare Disease Day 2025! REMEMBER TO TAG US! 😘 @medicsforrare

There are nearly 100 of you signed up for our Rare 101 webinar! 😀 Have you signed up yet? Go go go! www.m4rd.org/event/rare-d...

Rachel Bowden-Hulme, one of the Runners up for The Student Voice Prize 2024 tells us what the most rewarding part of taking part in the competition was for her. 🏆 You can take a look back at the winning essays on the 28th February!

Speaker announcement! 🙌 Our ambassador Daval will be speaking at our #RareDisease 101 webinar on 25th February! Daval will be talking about his experiences of EB and what patient advocacy groups like @charitydebra.bsky.social bring to people with #rareconditions. www.m4rd.org/event/rare-d...