Medics for Rare Disease

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Medics for Rare Disease

Medics for Rare Disease is defining excellence in rare disease medical training With a larger vision of equitable healthcare for everyone.

Our mission is to shape a medical profession that can provide people living with rare conditions a timely diagnosis and excellent care. We are achieving our mission through advocacy, Rare Disease 101 training and our expanding Ambassador network. And in line with our core values:
Compassion - we challenge with kindness
Authenticity - we act with integrity
Individuality - we value people for who they are

11/06/2026

Last week, the Medics for Rare Disease team attended the European Conference on Rare Diseases (ECRD) in Prague.

Where we were proud to represent our work alongside the wider rare disease community.

We presented our poster on the RISE study, discussing rare disease knowledge among UK medical students, and engaged with experts driving progress in care and education.

Key highlights from the event included:

🌟Seeing rare disease recognised as a priority by ministers across Europe. With the UK Rare Diseases Framework due to conclude next year, these conversations highlighted the importance of maintaining momentum and ensuring that ambition is matched by action.

🌟 Hearing the provisional findings from the latest Rare Barometer survey, which shone a light on the mental health challenges that many people living with a rare disease continue to face.

🌟 Learning more about the GEMS project, an innovative initiative investigating protective modifier genes that may help explain the variability of cardiovascular damage in people with Marfan syndrome.

Stay tuned for more reflections and key takeaways on our upcoming blog post. 📝

10/06/2026

Working as a healthcare professional in Greater London? With young people?

Then you NEED to know about - a specialist youth charity providing support to young carers and young people with chronic illness, aged between 12-18.

You can refer a young person who lives in London and Greater London area via their website. If accepted they will join a 3 year programme to help them engage, inspire and achieve their full potential.

The team are brilliant and it was a pleasure to meet Shanice, Bonnie and Corey on Friday at .nhs who hosted the annual EWOPA meeting 🩷🎉

08/06/2026

On 16 May, Swansea’s second Rare Disease Study Day returned to Morriston Hospital, organised by our very own Dr James Ainsworth! 🎉

The day brought together medical students, resident doctors, clinicians, and advocates for an inspiring programme of expert talks, lived experience perspectives, panel discussions, and networking opportunities.

Attendees explored the challenges and opportunities of rare disease care, met local patient advocacy groups, and showcased their own work through our oral and poster presentation competitions.

Congratulations to all of our oral presentation and poster prize winners, and a huge thank you to everyone who contributed their time, knowledge, and experiences to make the day such a success.

We’re already looking forward to the next one! 💙

05/06/2026

As we look ahead to World Sickle Cell day on 19th June 2026 we are reflecting on last year’s impactful event.

We had the privilege of attending the Sickle Cell Alliance event in London that brought the realities of living with sickle cell disease to life through powerful lived experience stories, advocacy, and calls for greater equity in care. As well as the importance of mental health support and human rights advocacy.

The event was a powerful reminder of the resilience within the sickle cell community and the importance of listening to lived experiences to drive meaningful change in healthcare.

This year’s event is shining a light on ✨ Voices of Resilience ✨.
To amplify the experiences, and voices of people living with sickle cell disease while calling for greater awareness, research, equity, and action.

World Sickle Cell Day 2026 event 🩸
📅 19 June 2026
📍 Camden Town Hall, London
🕙 10:00–17:00

🔗Sign up in the bio!

Advocacy

29/05/2026

Today is Addison’s Disease Day! A day to shine a light, raise awareness, and celebrate the Adrenal Insufficiency community.

This year, it’s time to turn awareness into action!

We are so grateful to Ava, a Year 6 pupil, for filming this video for our Rare Disease Day campaign and sharing her experience of living with Addison’s disease. By telling her story in her own words, Ava helped spark important conversations in her classroom and raise awareness of what life with Addison’s disease can look like for young people.

🗣️ At Medics for Rare Disease, we are committed to improving awareness, education, and equity for people living with rare conditions. In 2024, we worked alongside our ambassadors and allies to consult on the NICE Adrenal Insufficiency guidelines. This work contributed to revised recommendations for clinicians examining people of colour, where skin hyperpigmentation (a key sign of adrenal insufficiency) may not be as easily recognised.

🔗 You can also listen to our previous podcast with ambassador Dr Grace and her brother Eddie, who was diagnosed with Addison’s disease during the pandemic while Grace was studying medicine at university at the link in our Bio.

Head to to learn more, get involved, and help turn awareness into action. 💙

27/05/2026

Every Voice Matters. 💙

We’re proud to be featured and partner with Trialport in their newsletter - Every Voice Matters.

This marks our final piece in a 3-part Rare Insight series with Trialport. Helping spotlight the perspectives of people living with rare conditions and the importance of looking beyond symptoms to provide holistic care and listening to the lived experience of indivudals across healthcare.

A huge thank you to Emma for writing these pieces and to Trialport for shining a spotlight on rare. 🦓

🔗 Read the full newsletter via the link in bio.

26/05/2026

Rare Disease Day may be over, but we still have lots of merch online to show you’re Rare Aware....

Whether you fancy:

☕ Coffee cups

📸 Disposable cameras

🧦 Socks

📛 Pin badges

🔖 Lanyards

…we’ve got something for you 👀

Every purchase helps support Medics for Rare Disease and keeps rare disease awareness going all year round 🙌

🛍️ Shop now: https://m4rdshop.myshopify.com/

Also... what else would YOU love to see in the shop? Drop your dream merch ideas below ⬇️💭

22/05/2026

We’re delighted to have been recognised as a Highly Commended Impact Storyteller in the impact pioneer awards! 🎉
This award recognises social enterprise’s using story telling to drive change and make positive impact. We’re deeply honoured that our storytelling efforts have been recognised as a meaningful part of advancing our mission to shape a medical profession that can provide a timely diagnosis and equitable care to people living with rare disease.

Read Lucys blog post in our Bio to learn more about the journey of Medics for Rare Disease and the importance of impact storytelling in rare disease advocacy.

Thank you to everyone who has supported our journey. 💙

14/05/2026

We’re incredibly proud to share that Medics for Rare Disease has been recognised in the NatWest SE100 Index of the UK’s top social enterprises 🏆

We are also honoured to be named a Highly Commended finalist for the Impact Storyteller Award, and to see our CEO, Lucy McKay, recognised among the UK’s Top 100 Pioneering Impact Leaders. 🎉

This recognition is so meaningful to us as we continue to work to ensure healthcare professionals better understand the lived experiences of people affected by rare disease. Through education, patient voice and collaboration, we aim to reduce diagnostic delays and improve care for the 3.5 million people in the UK living with a rare condition.

Thank you to the NatWest SE100 team for considering our application and for recognising the work of a small but ambitious charity working to improve rare disease education. 💙

A huge thank you to our community, ambassadors, partners and supporters who continue to help drive this work forward 💙

SocialEnterprise RareDiseaseAwareness RareAware

12/05/2026

Happy International Nurses Day! 💙🌍

Nurses are at the heart of healthcare - and for the 300 million people worldwide living with a rare condition, nurses can play a vital role in recognising red flags, listening closely, coordinating care, advocating fiercely, and supporting families through every stage of the journey.

Rare disease care usually doesn’t begin in specialist centres - meaning that nurses in every setting have a role to play in improving care.

This International Nurses Day, we celebrate the incredible nurses already making a difference. Want to build your confidence? Explore Rare Disease 101 for Nurses, produced in collaboration with the Global Nursing Network for Rare Diseases, and take the first steps to becoming Rare Aware. Sign up for free at learn.m4rd.org.

Thank you to nurses everywhere for your skill, kindness, and commitment. 💖

Address

London
SE1 7EH

Website

http://www.m4rd.org/

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