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camrare.bsky.social
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
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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.”

submitted 2 days ago • 1 comment

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

submitted 10 days ago • 0 comments

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...

submitted 11 days ago • 0 comments

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

submitted 18 days ago • 1 comment

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

submitted 20 days ago • 0 comments

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

submitted 22 days ago • 0 comments

“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

submitted 24 days ago • 0 comments

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

submitted 29 days ago • 0 comments

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...

submitted 43 days ago • 0 comments

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

submitted 59 days ago • 0 comments