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Cambridge Rare Disease Network @camrare.bsky.social · 2d

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.

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Cambridge Rare Disease Network @camrare.bsky.social · 18d

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/

Cambridge Rare Disease Network @camrare.bsky.social · 23d

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/

Discover key takeaways from Jul 2025 Companies Forum

Cambridge Rare Disease Network @camrare.bsky.social · Aug 29

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

Experts, patients and policymakers come together at Companies Forum to explore how genomics, AI and policy can shorten the diagnostic odyssey in rare disease.

Catch a glimpse of the much anticipated RAREsummit25 programme.

Cambridge Rare Disease Network @camrare.bsky.social · Aug 12

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/

Cambridge Rare Disease Network @camrare.bsky.social · Aug 7

It's brilliant to have you on board!

Cambridge Rare Disease Network @camrare.bsky.social · Aug 5

Celebrating 10 years of progress and impact in rare diseases, the UK’s leading multi stakeholder RAREsummit returns to Cambridge

Cambridge Rare Disease Network @camrare.bsky.social · Jul 31

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.

@eastgenomics.bsky.social @genomicsengland.bsky.social

Cambridge Rare Disease Network @camrare.bsky.social · Jul 22

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/

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Cambridge Rare Disease Network @camrare.bsky.social · Jul 11

Cambridge Rare Disease Network @camrare.bsky.social · Jul 11

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...

Companies Forum - CamRARE (Cambridge Rare Disease Network)

Cambridge Rare Disease Network @camrare.bsky.social · Jul 11

At our next Companies Forum meeting (14 July), we’ll explore the latest innovations in diagnostics & how new technologies are becoming sci-fact, instead of fiction, in helping to change lives.

Together, we can make diagnosis faster, easier & more accurate for everyone - who needs a TARDIS hey!?

Cambridge Rare Disease Network @camrare.bsky.social · Jul 11

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

Cambridge Rare Disease Network @camrare.bsky.social · Jul 10

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...

Cambridge Rare Disease Network @camrare.bsky.social · 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

Cambridge Rare Disease Network @camrare.bsky.social · 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/1Snyk...

Cambridge Rare Disease Network @camrare.bsky.social · Mar 2

#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

Cambridge Rare Disease Network @camrare.bsky.social · Feb 26

Bethan suggests:

Schools must have a Young Carers Champion and have teachers who are aware. This is useful because sometimes young carers will be late to school, late with homework or distracted, because of their caring role.

Bethan asks: "What can you do to make a young carer feel valued today?

RAREfest24 The Highlights

Cambridge Rare Disease Network @camrare.bsky.social · Feb 26

Bethan writes this is what you can do to help them:

Nurses and family workers remember that we are there, and we are struggling too.

Young carers need a break. Give us time to deflate. Give us some of your time to check-in. Give us validation for what we do.

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Cambridge Rare Disease Network @camrare.bsky.social · Feb 26

Bethan is a sibling carer to someone with a rare disease & a CamRARE community member.

She's used her experiences to be a Young Carers Advisory Board member with Centre 33 & leads the Young Carers group at school. Young carers need a break, time to deflate, your time to check-in.

Cambridge Rare Disease Network @camrare.bsky.social · Feb 26

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?

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Cambridge Rare Disease Network @camrare.bsky.social · Feb 19

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.

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Cambridge Rare Disease Network @camrare.bsky.social · Feb 18

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...

YouTube video by Cambridge Rare Disease Network (CamRARE)

youtu.be

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Cambridge Rare Disease Network @camrare.bsky.social · Feb 10

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.

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Cambridge Rare Disease Network @camrare.bsky.social · Feb 9

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

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