If you are near Cambridge UK, come to our #LivingRare event at the DISC on 27 Feb - perfect for anyone who works on the Cambridge Biomedical Campus or at Addenbrookes, Papworth or Rosie Hospitals! camrarerarediseaseday2026.eventbrite.co.uk

Delighted to share the talk by Lucy McKay @medicsforrare.bsky.social from #RAREsummit25, on rare disease, human rights & global equity. Lucy shares insights from her work with the Lancet Commission on Human Rights and Rare Disease, on point with the #RareDiseaseDay of equity: youtu.be/jGPwbNzY0zY

We’re excited to share 'Rare Perspectives' - an insightful discussion at #RAREsummit25, where our panelists came together to discuss the realities of both living (and working) rare. Some members of our audience share their ‘top 5 rare priorities’. What are yours? youtu.be/jzq7wDS4kFQ #RareDiseaseDay

Mental and physical wellbeing are intrinsically linked, therefore #MentalHealth needs to be central to the conversations have this #RareDiseaseDay Insights from #RAREsummit25 panellists Kelly, Max & Tom @tomstaniford.bsky.social www.camraredisease.org/mental-wellb...

Last November I was privileged to speak at @camrare.bsky.social's #RAREsummit25 on a panel devoted to #MentalHealth for #RareDisease. You can now watch the full 30-min fireside chat over on their YouTube channel. www.youtube.com/watch?v=IyJx...

Join #CamRARE in Cambridge (27 Feb) for #RareDiseaseDay Through powerful lived-experience stories & a multidisciplinary panel, we’ll explore what it means to live with a rare condition & how systems can better respond throughout a lifetime. Tickets: camrarerarediseaseday2026.eventbrite.co.uk

Milner Seminars: focus on neurodegeneration 🧠 We're excited to welcome you to our 2026 seminar series! Join us on 27 January for talks by Daniel Tams (Astex) and Stefano Pluchino (University of Cambridge) 🔗 https://milner.glueup.com/event/milner-seminars-focus-on-neurodegeneration-163500/

Catch up on the latest CamRARE news and hear about our plans for #RareDiseaseDay2026 mailchi.mp/camraredisea...

How can digital tech drive better evidence, fairer treatment access & a more empathetic experience for people with #RareDisease? This hot topic, coinciding with the MHRA’s Nov 2025 position paper, was discussed at CamRARE’s Companies Forum. Read more: www.camraredisease.org/digital-tech...

We're just £300 away our #RareTogether @biggive.bsky.social #ChristmasChallenge target! Please donate, like & share b4 12 noon on 9 Dec to double your impact and help us build a world where everyone with a rare condition feels connected, empowered & supported. 🧡 donate.biggive.org/campaign/a05...

We need your help! 🙏 We’re taking part in the @BigGive #ChristmasChallenge - so until 9 Dec donations are DOUBLED! 🙌 Your gift will bring joy, connection & confidence to children, young people & families on the, otherwise lonely, #RareDisease journey 🧡 donate.biggive.org/campaign/a05...

Across the UK, 3.5M people live with a rare condition. We’re here to ensure no one walks that path alone. Help us build connection, community & change! #RareTogether Until 9 Dec your donations via our @biggive.bsky.social #ChristmasChallenge page are doubled! donate.biggive.org/campaign/a05...

Get ready to double the difference! During the #ChristmasChallenge (2–9 Dec), every donation made via CamRARE's BigGive portal is doubled. Your gift this Christmas will help families find connection, community, and people who truly understand. #RareTogether donate.biggive.org/campaign/a05...

As our Managing Director and founding member prepares for her planned retirement, CamRARE is seeking a dynamic and visionary new leader to guide the charity into its next decade. Find out more about this exciting opportunity by following this link: www.charityjob.co.uk/jobs/cambrid...

It’s certainly a very busy time for #RareDiseaseNI. Good to connect with colleagues and meet new friends at today’s #CamRARE25. Excellent event hosted by @camrare.bsky.social as always. Thanks for the opportunity to participate :) safe home everyone #RareDisease

We were honoured to showcase our patient-led neurodevelopmental project, highlighting the need for tailored assessments and addressing families’ questions. Thank you, Cambridge Rare Disease Network & everyone who visited our stand. Your interest, ideas, & encouragement make this project possible.

📣 DON'T MISS OUT! We’re going global, with a virtual option to attend #RAREsummit25 this Thurs 6 Nov! Tickets give access to the auditorium talks, you'll be able to join interactive polls & Q&As with Slido Check out the programme & ticket link here: camraredisease.org/raresummit25

🎉 Excited to be a showcase charity at Cambridge Rare Disease Network 10th Anniversary Summit! Our patient-led neurology project on HI explores family questions & aims to improve early screening, follow-up & support. Visit us at our stand, we would love you to get involved! https://ow.ly/OjyI50Xi0HM

The #RAREsummit25 agenda is live! Packed with diverse voices, patient-driven insights & bold innovation. www.camraredisease.org/raresummit25... Grab your ticket to join us on 6 Nov to be part of the conversation & on't forget to book your dinner spot! What are you most looking forward to?

Celebrate. Connect. Shape the Future. Join our networking dinner. Finish #RAREsummit25 in style on 6 November. Raise a glass to a decade of driving change, championing collaboration, and giving voice to the rare disease community. Tickets: www.camraredisease.org/raresummit25/

Be in the room where ideas begin! At our #RAREsummit25, 3 patient voices will pitch research ideas shaped by their communities & lived-experience priorities in the Rare Disease Research Network Showcase - @rd-rn.bsky.social Tickets: www.camraredisease.org/raresummit25/

Ending the #DiagnosticOdyssey requires more than genome sequencing. It needs equity, trust, data & policy change. Read the key insights from our Companies Forum ➡️ www.camraredisease.org/diagnostic-o... @genomicsengland.bsky.social @sicklecelluk.bsky.social @lifearc.bsky.social @rairda.bsky.social

Did you know that only 5% of 10,000+ rare diseases have an approved treatment? Using #AI and other frontier technologies, our #RAREsummit25 sponsor, Healx, redevelops, combines & enhances known compounds to build a pipeline of therapies. Join them & us on 6 Nov: www.camraredisease.org/raresummit25/

Did you catch the latest about #RAREsummit25? - the programme is shaping up! RAREsummit alumni, patients pitching research ideas, interactive workshops, networking dinner and more... Read more here & grab your tickets before they're all snapped up! www.camraredisease.org/raresummit25...

Can you help raise awareness of rare conditions and their impact? Do you have an organisation or campaign you'd like to put in the spotlight? Become a media partner for #RAREsummit25 and build your network through ours! We're stronger together! Join us: www.camraredisease.org/raresummit25...

Using their knowledge in translational science, @lifearc.bsky.social are a charity dedicated to shaping the future for people living with #RareDiseases - making life science life changing - a perfect match as GOLD sponsor for #RAREsummit25 - thank you LifeArc! www.camraredisease.org/raresummit25/

Currently patients are having to embark on epic journeys, of many years, for a diagnosis and access to the right ‘Doctor’ - the diagnostic odyssey. Tell us the challenges you've had in rare disease diagnosis - as a patient, researcher, hcp or innovator.

Swoop in and catch your early bird ticket for #RAREsummit25 (6 Nov)! Don’t miss out on all the latest, as we celebrate CamRARE’s 10 yrs of impact and look forward to a future of possibilities! www.camraredisease.org/raresummit25/ 💡 Tell us what you'd like to see on the agenda...

RAREsummit25 is coming! 6 Nov | Wellcome Genome Campus, Cambridge We’re celebrating 10 years of rare disease impact – and looking to the future. Early bird tickets drop next week! #RareDisease #Innovation #PatientVoices #CambridgeEvents

Save the Date for #RAREsummit25 🗓️6 Nov 2025 Reflecting on 10 years of progress and possibility, and looking forward to shape the future of rare disease research, care, and advocacy. Get in touch if you’d like your organisation to be part of the action! drive.google.com/file/d/1Snyk...

#RareDiseaseDay25 activities still in full flow! A trip to the parliamentary reception at Westminster, a day talking to the public & HCPs at @cuhnhs.bsky.social & now Rare-I-Tea party with our families! Stripes at the ready

Recently Bethan has worked with CamRARE siblings through a workshop in collaboration with Centre 33. For #RareDiseaseDay, Bethan says: “Remember siblings. Young carers are like balloons. They inflate with all that’s going on with their sibling, but if the pressure gets too high - they pop.”

At CamRARE’s Companies Forum, we unite: 🔹 Biopharma 🔹 Healthcare & research 🔹 Patient groups Last meeting, we introduced the Rare Disease Research Network—co-created with patients to connect with experts to drive projects forward. Want to get involved? Let’s talk! #RareDiseaseDay #RareDisease

With #RareDiseaseDay on the horizon, we've been looking back at our achievements of the last year! We're super proud of how #RAREfest24 went! Catch the highlights & the playlist on our YouTube channel - don’t forget to subscribe! youtu.be/xIydyA0hdQw?... We can't wait to see what 2025 brings...

Did you know only 5% of 11,000+ rare diseases have a treatment? Our Companies Forum unites passionate experts from biopharma, healthcare, research & patient groups to break barriers & drive innovation. Find out more here: www.camraredisease.org/companies-fo... #RareDiseaseDay #LifeSciences #MedSky

Posting to the #ScienceFeed for anyone interested in #RareDiseaseResearch and being part of a multi-stakeholder #RareDiseaseNetwork bsky.app/profile/camr... bsky.app/profile/rd-r... 🧪 Give us a follow

It's #RareDiseaseDay at the end of February - chosen because when it's a leap year the last day in Feb is the 29th - the rarest date in the calendar! Get involved with www.rarediseaseday.org throughout Feb, to raise awareness of the challenges faced by the 1 in 17 people living with a #RareDisease

“Rare diseases are complex and ubiquitous; they represent a global challenge that needs a global response.” RDI Commission on Rare Diseases: improving visibility to address health-care disparities for 400 million people - www.thelancet.com/journals/lan... #RareDiseaseDay @thelancet.bsky.social

We’re super excited to announce our community RARE-i-Tea Party to celebrate #RareDiseaseDay2025 with @cardsforbravery & Shake Rattle & Roll for nattering, craft, sensory fun & music! 🗓️ 14:45 - 17:00 Sun 2 March 📍Cambridge All welcome bit.ly/Rare-I-Tea_2... #LightUpForRare

Did you miss RAREfest24? Or want to see if you made it into the highlights film, review or gallery? Head over to our new #RAREfest24 Highlights page where there’s a downloadable and flippable report, photos, films, stats and more … www.camraredisease.org/rarefest24-r...

#RAREfest24 … a snapshot of the BEST weekend! This is us 🦓 youtu.be/xIydyA0hdQw?...