Medics for Rare Disease

14/09/2026

The final RareCare reports are now live. 📣

RareCare is an NIHR-funded evaluation of the UK Rare Diseases Framework and England’s Rare Diseases Action Plans.

We were proud to be involved in and contribute to this important work.

The programme brings together lived experience, healthcare professional insight, indicator development and routine health data analysis to explore what progress in rare disease policy looks like and how it could be measured in future.

The reports highlight important progress in rare disease policy, research and infrastructure. They also show that policy ambition does not automatically translate into improved experiences for people living with rare diseases and their families.

A key message from RareCare is that future rare disease policy needs to consider:
• system-level change
• service-level delivery
• lived experience and family impact

This matters because completing actions is not the same as knowing whether diagnosis, care, support and access are improving in people’s lives.

RareCare is an important evidence base for the next phase of rare disease policy.

All the reports can be read here 👉 https://rarecare.online

To find out what happens next join RareCare, the Office for Life Sciences, Genetic Alliance UK, and Breaking Down Barriers on 17 September, 13:00–14:00 BST, for RareCare: What Happens Next? Turning Evidence into Action.

11/09/2026

🌟 Get ready for an inspiring day at CamRARE’s RARESummit 2026!

Join us in attending on Wednesday, 7 October, for an action-packed agenda filled with interactive panel discussions, enlightening presentations, hands-on workshops, and insightful exhibitions. Diving into crucial topics from partnerships to rare care and health data.

The day has been designed to be as interactive as possible.

Lived experience is at the heart of RARESummit, with conversations centred on the experiences and perspectives of individuals and families living with rare conditions.

🔗 Link in the Bio to sign up and join us there.

08/09/2026

Next week we will be joining Rare4Schools for their parliamentary event at Westminster to unite Rare Disease and Education policy.

Children and young people living with rare conditions deserve an equitable education. Teachers and school staff are essential members of the multidisciplinary team alongside healthcare professionals. All having a critical role to play in helping children and young people access, engage with and thrive in education.

We’re looking forward to joining forces with Rareminds , Cambridge Rare Disease Network (CamRARE) Rare4Schools and Intent Health to ensure rare conditions never become a barrier to a child’s potential.

A huge thank you to Sarah Hall MP for hosting this important parliamentary event.

# Parliament

05/09/2026

This International Day of Charity, we’re celebrating what we’ve achieved together.

By taking a look back at our 2025 impact...

🩺 We trained over 1,300 health care professionals in Rare Disease 101 as well as expanding our courses.

🦓 Delivered a UK-wide Rare Disease Day campaign.

🌍 We reached healthcare professionals across 80 countries.

📣 Expanded our network of ambassadors to over 80 people who continue to advocate for the rare community.

We are so grateful to everyone who has shared their story with us, fundraised for us, volunteered their time and supported us.

We rely on donations to continue training healthcare professionals, raising awareness and creating meaningful change for the rare disease community.

💜 Please donate today and help us make healthcare Rare Aware.

🔗 Donate via the link in our bio.

04/09/2026

04/09/2026

Have you discovered our Shop yet?

Whether you’re treating yourself to cosy Stripey socks, picking up a colourful lanyard, or the perfect travel cup for your coffee, every purchase helps support rare disease education for healthcare professionals.

Your support helps us to:

✅ Deliver high-quality learning resources

✅ Improve rare disease education

✅ Amplify patient voices

✅ Work towards more equitable healthcare

So go on… treat yourself, gift a friend, and support a great cause while you’re at it! 💙

🛍️ Shop now via the link in our bio.

27/08/2026

Every movement is built by people and we’re celebrating an extraordinary group of them. 💜

Our 2024 Ambassador cohort has reached the end of their two-year journey with Medics for Rare Disease, and we couldn’t be more grateful for everything they’ve contributed.

From delivering Rare Disease 101 and organising events to speaking on panels and sharing deeply personal lived experiences, they’ve helped hundreds of healthcare professionals and students become more Rare Aware. Encouraging them to listen, recognise the signs and think rare.

But their impact goes beyond the numbers. They’ve built friendships, challenged thinking and created a community that continues to shape our work.

To every 2024 Ambassador: thank you. Your passion, generosity and advocacy have left a lasting mark. 💜

And this isn’t goodbye. You’ll continue as part of our growing Ambassador Network as we evolve our programme and create new ways for our community to connect, get involved and drive change.

One chapter closes, and an exciting new one begins.

Watch this space. ✨

26/08/2026

📣 Research opportunity for professionals working with sudden and unexpected child death.

The University of Southampton is inviting professionals who have worked with sudden and unexpected death in children within the past five years to take part in a national research survey.

This research aims to improve training and support for healthcare professionals, while also helping to ensure that bereaved families receive the compassionate, informed and consistent support they need during an incredibly difficult time.

By sharing your experiences, you can help shape future practice and support for both professionals and families affected by sudden and unexpected child death.

The survey takes around 40 minutes to complete.

For more information and to take part, follow the link in our bio.

09/07/2026

An appreciation post for this Thursday!

We want to shine a light and extend our heartfelt thanks to everyone who has fundraised for us over the years.

Today we are spotlighting Sam and Paula for their incredible fundraising challenges they took on for Medics for Rare Disease last year.

🏃‍♂️‍➡️ Thank you to Sam who ran an Ultra marathon in Morocco through traditional fortified villages, over rocky desert and lush Sahara oases for us last November!

🥾 Thank you to our very own Paula who hiked the Lofoten Islands, in Norway covering a distance of 57km over just 6 days!

There are so many more people we have to thank for their fundraising efforts so watch this space.🌟

Do you fancy taking on a challenge this year or have an idea for a fundraiser? We’d love to hear it! Get in touch at [email protected] and we’ll be happy to support you every step of the way. 💙