Sign in

CamRARE (Cambridge Rare Disease Network)

@camrare.bsky.social
441 followers 387 following 49 posts

Building cross sector networks to help create a world where everyone affected by a rare condition feels connected, empowered, and supported. #RareDisease #RareConditions Local | National | Global www.camraredisease.org

PostsRepliesMedia
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 08/09/2026
Join us on Wed 7 Oct for a packed programme of talks, panels and interactive workshops at #RAREsummit26 - exploring policy, care, health data, partnerships and innovation. 📍 Cambridge or online 🎟️ Programme & tickets: camraredisease.org/raresummit26... #RareDisease #RareConditions
A rare summit graphic with photos of previous summit events and title: Agenda is now available to view.
032
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 19/02/2026
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
camrarerarediseaseday2026.eventbrite.co.uk
Living Rare: Reflections Across a Lifetime
Join CamRARE on 27 February 2026 to mark International Rare Disease Day for ‘Living Rare: reflections across a lifetime
041
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 19/02/2026
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
youtu.be
RAREsummit25 - Exploring rare diseases through the lens of human rights
YouTube video by Cambridge Rare Disease Network (CamRARE)
031
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 13/02/2026
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
youtu.be
RAREsummit25 - Rare Perspectives - Career, Family and Rare Disease Advocacy
YouTube video by Cambridge Rare Disease Network (CamRARE)
041
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 06/02/2026
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...
camraredisease.org
Navigating Mental Wellbeing at RAREsummit25
Insights from the RAREsummit25 panel and workshop exploring the need for improved support for mental health for people with rare conditions.
042
Reposted by CamRARE (Cambridge Rare Disease Network)
Tom Staniford @tomstaniford.bsky.social · 06/02/2026
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...
youtube.com
RAREsummit25 - Mental Wellbeing - Supporting mental health while living with a rare condition
YouTube video by Cambridge Rare Disease Network (CamRARE)
051
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 26/01/2026
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
Graphic using Rare Disease Day branding. Title CamRARE, living rare. Photos of speakers along the bottom edge of the image, including two young adults.
066
Reposted by CamRARE (Cambridge Rare Disease Network)
Milner Therapeutics Institute 🧪 @milnerinst.bsky.social · 15/01/2026
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) 🔗 milner.glueup.com/event/milner-semi…
042
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 22/01/2026
Catch up on the latest CamRARE news and hear about our plans for #RareDiseaseDay2026 mailchi.mp/camraredisea...
Large Cam Rare logo - a stylised DNA helix - with title Network News, connection, collaboration, community
011
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 20/01/2026
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...
camraredisease.org
Discussing digital tech and patient data at Companies Forum
Experts, patients and policymakers come together at Companies Forum to explore how digital tech can be harnessed to aid patient data collection.
020
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 08/12/2025
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 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.
031
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 04/12/2025
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!
000
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 02/12/2025
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.
042
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 28/11/2025
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.
000
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 18/11/2025
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...
charityjob.co.uk
Manging Director | Cambridge Rare Disease Network | CharityJob
Apply now for Manging Director. , £54,000 per year, find a career with meaning today
001
Reposted by CamRARE (Cambridge Rare Disease Network)
Prof AJ McKnight @aj-mcknight.bsky.social · 06/11/2025
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 posterRaresummit 25 opening slide picAJ, Sam and DJ in Hinxton Hall picHappy sunshine smile sticker
011
Reposted by CamRARE (Cambridge Rare Disease Network)
Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 07/11/2025
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.
022
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 04/11/2025
📣 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.
021
Reposted by CamRARE (Cambridge Rare Disease Network)
Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 27/10/2025
🎉 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! ow.ly/OjyI50Xi0HM
032
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 09/10/2025
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.
053
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 23/09/2025
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.
000
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 17/09/2025
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.
011
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 29/08/2025
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
camraredisease.org
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.
030
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 12/08/2025
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.
001
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 05/08/2025
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...
camraredisease.org
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
041
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 31/07/2025
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 shows an icon of hands shaking and title text: The rare disease community needs YOU! Become a Media Partner for rare summit 2025.
021
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 22/07/2025
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.
031
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 11/07/2025
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 CareGraphic for session 1 - screening. Photos & names of of speakers: Anna Need, Genomics England & Iyamide Thomas, Sickle Cell SocietyGraphic for session 2 - Embedding in Policy. Photos & names of of speakers: Liz Hookham, LifeArc & Sue Farringdon, SRUK
110
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 10/07/2025
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.
020
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 08/05/2025
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.
000
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 07/03/2025
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'
021
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 02/03/2025
#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
040
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 26/02/2025
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?
111
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 19/02/2025
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.
052
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 18/02/2025
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...
youtu.be
RAREfest24 The Highlights
YouTube video by Cambridge Rare Disease Network (CamRARE)
032
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 10/02/2025
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.
171
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 09/02/2025
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
bsky.app
011
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 07/02/2025
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 disease day official graphic with blue and pink paint effect background. Text reads: Cam rare supports rare disease day, 28 Feb 2025
086
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 05/02/2025
“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
thelancet.com
The RDI–Lancet Commission on Rare Diseases: improving visibility to address health-care disparities for 400 million people
Rare diseases are complex and ubiquitous; they represent a global challenge that needs a global response. A rare disease is commonly defined as a medical condition that affects fewer than one in 2000 ...
041
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 31/01/2025
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
052
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 17/01/2025
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...
042
CamRARE (Cambridge Rare Disease Network) @camrare.bsky.social · 01/01/2025
#RAREfest24 … a snapshot of the BEST weekend! This is us 🦓 youtu.be/xIydyA0hdQw?...
youtu.be
RAREfest24 The Highlights
YouTube video by Cambridge Rare Disease Network (CamRARE)
062