@camrare
Making rare disease an everyday conversation. CamRARE is a charity empowering rare disease communities & fostering cross-sector collaboration to improve outcomes for those affected. #RareDisease Local | National | Global www.camraredisease.org
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...
Graphic using Rare Disease Day branding. Title CamRARE, living rare. Photos of speakers along the bottom edge of the image, including two young adults.
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/
Large Cam Rare logo - a stylised DNA helix - with title Network News, connection, collaboration, community
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...
Photo of a preschool child standing on a woodland path. They are wearing a winter coat, red hat and wellies, and looking down at a patchwork bear that’s dropped in a puddle. Around the photo is a red triangle and Big Give Christmas Challenge branding.
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...
Photo of two young people performing on stage together. One young person in a wheelchair is clapping, the other is leaning in in a balance pose. A Christmas tree graphic says: Have your Christmas donation doubled!
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...
Thank you so much!
Two Polaroid photos taped to a red Christmas wrapping paper style background. The first photo shows five children and the second shows ten children and young people. Text says: One donation, double the difference.
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...
Photo from a dance performance. A teen girl in the centre of the image is pointing upwards at text reading: get ready to have your donations doubled.
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...
Sam presenting caring with rare poster
Raresummit 25 opening slide pic
AJ, Sam and DJ in Hinxton Hall pic
Happy sunshine smile sticker
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.
Graphic including a computer monitor showing a still image from rare summit 2019. Text reads: join us wherever you are in the world. Live stream.
📣 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
An abstract image formed of an array of triangles in the shape of a forward facing arrow. Some of the triangles contain pictures from the previous summits, illustrating the talks, exhibitions and conversations. Text: Thurs 6 November at Hinxton Hall, Wellcome Genome Campus.
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?
Photograph of a bottle of wine and wine glasses on a table. The wine label says 'rare'. Rare summit branding and logo are overlaid on the photo.
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/
A large hexagon contains the RDRN logo, with 3 smaller hexagons below containing David Hogan and Scott Hutchings photos, and the Children's Hyperinsulinism logo, all surrounded by triangles in the Rare Summit branding style.
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
Graphic image with Rare Summit branding surrounding a hexagon containing the Healx logo.
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/
It's brilliant to have you on board!
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...
Graphic image shows an icon of hands shaking and title text: The rare disease community needs YOU! Become a Media Partner for rare summit 2025.
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...
Graphic image with Rare Summit branding surrounding a hexagon containing the LifeArc logo.
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/
@eastgenomics.bsky.social @genomicsengland.bsky.social
If your organisation is interested in getting involved in Companies Forum and to come along to our next quarterly meeting, hop over to our website for more info: www.camraredisease.org/companies-fo...