Cambridge Rare Disease Network (CamRARE)

@camraredisease

making #rarediseases an everyday conversation https://bsky.app/profile/camrare.bsky.social

Cambridge, UK

Joined January 2015

6KFollowing

8KFollowers

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Cambridge Rare Disease Network (CamRARE)@camraredisease · Mar 7

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/1SnykPr…

camraredisease's tweet image. 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/1SnykPr…

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Cambridge Rare Disease Network (CamRARE)@camraredisease · Jul 22

Using their knowledge in translational science, @lifearc1 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 - huge thank you LifeArc! camraredisease.org/raresummit25/

camraredisease's tweet image. Using their knowledge in translational science, @lifearc1 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 - huge thank you LifeArc!
camraredisease.org/raresummit25/

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Cambridge Rare Disease Network (CamRARE)@camraredisease · Mar 13

A huge THANK YOU to @EoECoop at One Cambridge Square who have raised £214.75 for CamRARE during their winter Local Giving campaign! Helping us to continue to support our RARE community! 🙏 #ThankfulThursday

camraredisease's tweet image. A huge THANK YOU to @EoECoop at One Cambridge Square who have raised £214.75 for CamRARE during their winter Local Giving campaign!
Helping us to continue to support our RARE community! 🙏
#ThankfulThursday

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Cambridge Rare Disease Network (CamRARE)@camraredisease · Jul 25

Secure your spot at RAREsummit25 - RAREsummit highlights and news, we're hiring! Shelford Fun Run is opn for sign ups and more...Check out our latest newsletter to keep updated. - mailchi.mp/camraredisease…

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Cambridge Rare Disease Network (CamRARE) Retweeted

Shelford Fun Run 5k@Shelford_FunRun · Jul 13

🙋 Hands up if you’re as excited as we are about this years Shelford 5k Fun Run! 🎟 Have you booked your place yet? shelfordfunrun.co.uk 📣 Big shout out to our amazing sponsors, we couldn’t do this without them!

Cambridge Rare Disease Network (CamRARE)@camraredisease · Jun 5

We’re excited to be part of the upcoming @Conexen_Cambs event next week. #PrioritisingPatients #CoCreation #PatientsAsPartners

CCONEXEN@Conexen_Cambs · May 21

Have you registered yet? Don't miss our CONEXEN Cambridge Life Sciences Community event on 12 June 2025 featuring an insightful panel discussion on "Prioritising Patients: Driving Innovation and Impact in Life Sciences" - Kindly hosted by KISS Communications

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Cambridge Rare Disease Network (CamRARE)@camraredisease · Jun 4

Our Spring 2025 Network News has just landed in your inbox! Early bird tickets for # Raresummit25 are now available at bit.ly/RAREsummit25_t… - mailchi.mp/camraredisease…

camraredisease's tweet image. Our Spring 2025 Network News has just landed in your inbox! Early bird tickets for # Raresummit25 are now available at bit.ly/RAREsummit25_t… - mailchi.mp/camraredisease…

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Cambridge Rare Disease Network (CamRARE)@camraredisease · May 8

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

camraredisease's tweet image. 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

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Cambridge Rare Disease Network (CamRARE)@camraredisease · Apr 29

Have you signed up for yours? A summary health and care passport for any rare condition at any age!

CChildren's Hyperinsulinism Charity UK & Ireland@CHCharityUK · Apr 27

🚨 CamRare 'This is Me' Patient Passports are fantastic for medical appointments, travel & school. Folding down into a lanyard size they are perfect for recording & communicating #Hyperinsulinism & individual needs 💖 Thank you @CamRareDisease ✔️Sign up: forms.gle/ggp9afsaH8p8Ez…

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Cambridge Rare Disease Network (CamRARE)@camraredisease · Apr 29

CamRARE trustee Loretta lives with #Fabry Disease, a rare, inherited lysosomal storage disorder that can affect many vital organs, including the heart, kidneys, brain, skin, and eyes. Watch the full 'Could it be Fabry?' video on @DrODonovan channel on YouTube.

AAmicus Therapeutics@amicusrx1 · Apr 5

The journey to a #Fabry disease diagnosis can be long and complex. Watch Dr James O’Donovan sit down with Loretta MacInnes to discuss the challenges of diagnosis. Full video: youtu.be/VeFTBHSiMJU?fe…… #amicuscares #CouldItBeFabryNP- NN-IN-00010325

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Cambridge Rare Disease Network (CamRARE)@camraredisease · Apr 25

Today we're supporting #SWANUK's Undiagnosed Children's Day. Genetic testing is advancing fast, but many families still wait years for a diagnosis—or never get one. @SWAN_UK supports those on this uncertain journey. Invaluable connection. Shared strength. #Undiagnosed #UltraRare

camraredisease's tweet image. Today we're supporting #SWANUK's Undiagnosed Children's Day.
Genetic testing is advancing fast, but many families still wait years for a diagnosis—or never get one. @SWAN_UK supports those on this uncertain journey. Invaluable connection. Shared strength.
#Undiagnosed #UltraRare

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Cambridge Rare Disease Network (CamRARE)@camraredisease · Apr 11

Did you know ‌CamRARE runs a Companies Forum? Next meeting (25 Apr): Putting Patients at the Heart of Real-World Evidence Find out about joining this expert group of biopharma, healthcare & patient groups to shape the future of evidence-based medicine... camraredisease.org/companies-forum

camraredisease's tweet image. Did you know ‌CamRARE runs a Companies Forum?
Next meeting (25 Apr): Putting Patients at the Heart of Real-World Evidence
Find out about joining this expert group of biopharma, healthcare &amp; patient groups to shape the future of evidence-based medicine...
camraredisease.org/companies-forum

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Cambridge Rare Disease Network (CamRARE) Retweeted

EOS Network Eosinophilic Diseases Charity@CharityEos · Mar 24

🟣Navigating eliminating food from your diet is challenging. 👉Join and share our workshop, where we'll cover common questions and the latest #eosinophilic #diets updates: eosnetwork.org/Event/diets-in… #MedTwitter #MedEd #GITwitter #eoe #Gastroenterology #gastro #research

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Cambridge Rare Disease Network (CamRARE)@camraredisease · Mar 12

💥@the_rdrn is a new, inclusive, online hub facilitating patient-initiated #raredisease research, co-created by the @camraredisease & @plrh_cambridge 🖥️Join our upcoming webinar and hear from Laura Cowley, Research Lead, Patient Led Research Hub! 🔗tinyurl.com/yy2af665

RRare Disease Research UK@RDRUKHub · Jan 15

🧲Ready to make a real difference in research and advocacy? 📡By listening, sharing, and working together, we can better address the challenges faced in rare disease research 🌟Join us for our free webinar on Introduction to Co-Production! Register now🔗tinyurl.com/yy2af665

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Cambridge Rare Disease Network (CamRARE)@camraredisease · Mar 9

What a great day at the @cambridgehalf cheering on the incredible community of runners, many raising money for charities A couple of our runners here - Ian, running the 6th time for us! And Katy, @Cambridge_Uni Med student gofundme.com/f/cam-half-in-…

camraredisease's tweet image. What a great day at the @cambridgehalf cheering on the incredible community of runners, many raising money for charities

A couple of our runners here - Ian, running the 6th time for us! And Katy, @Cambridge_Uni Med student gofundme.com/f/cam-half-in-…

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Cambridge Rare Disease Network (CamRARE)@camraredisease · Mar 5

Athena, Ryan, & Zachary share their motivations for taking part in the @CambridgeHalfUK for CamRARE, their connection to #RareDiseases , and their hopes for a future where no patient is left behind. Read on to find more & and how you can support them! camraredisease.org/running-for-ra…

camraredisease's tweet image. Athena, Ryan, &amp; Zachary share their motivations for taking part in the @CambridgeHalfUK for CamRARE, their connection to #RareDiseases , and their hopes for a future where no patient is left behind.
Read on to find more &amp; and how you can support them!
camraredisease.org/running-for-ra…

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Cambridge Rare Disease Network (CamRARE)@camraredisease · Mar 4

A huge thank you to the lovely #CommunityChampion Team and Martin at @tesco Bar Hill, Cambs, for stocking us up with refreshments and goodies to celebrate #RareDiseaseDay - We raised £270 for our community!! 🎉

camraredisease's tweet image. A huge thank you to the lovely #CommunityChampion Team and Martin at @tesco Bar Hill, Cambs, for stocking us up with refreshments and goodies to celebrate #RareDiseaseDay - We raised £270 for our community!! 🎉

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Cambridge Rare Disease Network (CamRARE) Retweeted

NCBRS Worldwide Foundation - Nicolaides Baraitser@ncbrsfoundation · Mar 1

Did you miss any of our posts from #RareDiseaseDay2025 yesterday? Then check out our video/reel to recap why our #NCBRS families, Board Members and Partner Organisations are involved in and support #RareDiseaseDay… 🧡💚💙 #NCBRSRare #RDD2025 #RDD @RareDiseaseDay

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Cambridge Rare Disease Network (CamRARE) Retweeted

RARE Revolution Magazine@RareRevolutionM · Feb 28

"People are at the heart of all we do at @CamRareDisease Our Unique Feet group supports families in the East of England with inclusive activities & peer support—reducing isolation & empowering families. Check out what we've been up to…"

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Cambridge Rare Disease Network (CamRARE) Retweeted

RARE Revolution Magazine@RareRevolutionM · Feb 28

RAREsummit is returning on 6 Nov 2025! #RareDisease stakeholders gather to shine & mingle, united in their mission to pave the way towards a brighter future. See the review of RAREsummit23 for a flavour of what it's all about! youtu.be/2tnxDwDAAhw?si… @CamRareDisease

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