Cambridge Rare Disease Network
LightNews LightNews
banner
camrare.bsky.social
Cambridge Rare Disease Network
@camrare.bsky.social
420 followers 390 following 40 posts
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
Posts Replies Media Videos
camrare.bsky.social
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...
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!
December 4, 2025 at 1:45 PM
camrare.bsky.social
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...
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.
December 2, 2025 at 1:58 PM
camrare.bsky.social
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...
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.
November 28, 2025 at 4:58 PM
camrare.bsky.social
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...
Manging Director | Cambridge Rare Disease Network | CharityJob
Apply now for Manging Director. , £54,000 per year, find a career with meaning today
www.charityjob.co.uk
November 18, 2025 at 9:41 AM
Reposted by Cambridge Rare Disease Network
aj-mcknight.bsky.social
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
Sam presenting caring with rare poster Raresummit 25 opening slide pic AJ, Sam and DJ in Hinxton Hall pic Happy sunshine smile sticker
November 6, 2025 at 8:13 PM
Reposted by Cambridge Rare Disease Network
chcharityuk.bsky.social
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.

November 7, 2025 at 4:05 PM
camrare.bsky.social
📣 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
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.
November 4, 2025 at 7:40 PM
Reposted by Cambridge Rare Disease Network
chcharityuk.bsky.social
🎉 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
October 27, 2025 at 3:59 PM
camrare.bsky.social
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?
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.
October 9, 2025 at 10:27 AM
camrare.bsky.social
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/
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.
September 23, 2025 at 10:39 AM
camrare.bsky.social
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/
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.
September 17, 2025 at 1:30 PM
camrare.bsky.social
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
Discover key takeaways from Jul 2025 Companies Forum
Experts, patients and policymakers come together at Companies Forum to explore how genomics, AI and policy can shorten the diagnostic odyssey in rare disease.
www.camraredisease.org
August 29, 2025 at 6:22 AM
camrare.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/
Graphic image with Rare Summit branding surrounding a hexagon containing the Healx logo.
August 12, 2025 at 1:56 PM
camrare.bsky.social
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...
Catch a glimpse of the much anticipated RAREsummit25 programme.
Celebrating 10 years of progress and impact in rare diseases, the UK’s leading multi stakeholder RAREsummit returns to Cambridge
www.camraredisease.org
August 5, 2025 at 11:04 AM
camrare.bsky.social
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 shows an icon of hands shaking and title text: The rare disease community needs YOU! Become a Media Partner for rare summit 2025.
July 31, 2025 at 8:18 AM
camrare.bsky.social
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/
Graphic image with Rare Summit branding surrounding a hexagon containing the LifeArc logo.
July 22, 2025 at 7:11 AM
camrare.bsky.social
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.
Graphic with the title - Reducing the diagnostic odyssey in rare disease. Photo of a blue police box (TARDIS) in a large circle. Graphic for session 2 - Emerging Technologies. Photos & names of of speakers: Gemma Chandratillake, NHS East Genomics; Elizabeth Varones, Mendelian; Saran Muthiah, Enrich My Care Graphic for session 1 - screening. Photos & names of of speakers: Anna Need, Genomics England & Iyamide Thomas, Sickle Cell Society Graphic for session 2 - Embedding in Policy. Photos & names of of speakers: Liz Hookham, LifeArc & Sue Farringdon, SRUK
July 11, 2025 at 1:42 PM
camrare.bsky.social
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...
Rare Summit 2025 logo below a large hexagon with an icon of a ticket and a silhouette of a bird and text: Early bird tickets available now.
July 10, 2025 at 2:37 PM
camrare.bsky.social
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
Graphic image with Rare Summit logo and two photographs from previous summits. Text says: Early bird tickets coming soon.
May 8, 2025 at 12:58 PM
camrare.bsky.social
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...
Promo graphic with a grid of coloured triangles and the Rare Summit logo, with text saying 'save the date: 6 Nov 2025'
March 7, 2025 at 2:33 PM
camrare.bsky.social
#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
March 2, 2025 at 1:04 PM
camrare.bsky.social
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.”
Photo of two young people, both wearing a pale pink hoodie and black trousers. The taller girl is wearing a Centre 33 lanyard. Text reads: What can you do to make a young carer feel valued today?
February 26, 2025 at 12:55 PM
camrare.bsky.social
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
Quote from member, Madhu Madhusudhan of LifeArc: Thanks to CamRARE for organising today's Companies Forum session. I am going to join RDRN to see how I can help and have come away buzzing with ideas on how we could all help contribute with our expertise to help identify and progress treatments for rare disease patients.
February 19, 2025 at 8:35 AM
camrare.bsky.social
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...
RAREfest24 The Highlights
YouTube video by Cambridge Rare Disease Network (CamRARE)
youtu.be
February 18, 2025 at 10:09 AM
camrare.bsky.social
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
Graphic image with Rare Disease Day and Cam Rare logos on a teal background and the quote: It is the variety of companies involved that creates synergies and opportunities for collaboration, which is essential in the rare disease field.
February 10, 2025 at 5:19 PM