CamRARE (Cambridge Rare Disease Network)

We want everyone affected by a rare condition to feel connected, empowered, and supported. Also at:

[Rare Disease Day @rarediseaseday]

What is a rare disease?

A rare disease is a condition experienced by fewer than 1 in 2,000 people. Yet together, more than 300 million people worldwide are living with a rare disease.

Rare diseases are rare. People living with them are not.💙

#RareDiseaseDay

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

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: https://t.co/T5yz1v5ska
#RareDisease #RareConditions

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

@ChesterfordRP Thank you for sharing!

[Chesterford Research Park @ChesterfordRP]

@camraredisease hosts a special event in Cambridge to mark #RareDiseaseDay on 27 Feb.
Through first-hand stories of lived experience attendees will learn about the challenges, milestones, & defining moments that shape life from early childhood onwards.
https://t.co/0vBWzWv6F5

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

We’re excited to share 'Rare Perspectives' from #RAREsummit25, where our panelists came together to discuss the realities of both living (and working) rare.
Members of our audience also share their ‘top 5 rare priorities’. What are yours?
https://t.co/0Wd0wuTvft
#RareDiseaseDay

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

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: https://t.co/ZLnvvvid2L

[Rare Disease Day @rarediseaseday]

👶 For children with genetic rare diseases, the rare disease journey often starts early.

💜 Equity for rare diseases means giving every child, everywhere, an equal start in life.

👉 Learn more:https://t.co/uZh1DF5TaT
#RareDiseaseDay #EquityForRare

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

Catch up on the latest CamRARE news and hear about our plans for #RareDiseaseDay2026
https://t.co/IaRhwpVecI

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

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: https://t.co/mkI1MOMlNF

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

CamRARE's Festive Greetings 2025 and #RareDiseaseDay news 2026- https://t.co/FVSDHOY3BR

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

Last chance to double the difference - the Big Give #ChristmasChallenge ends at noon today (9 Dec)!
Can you help us smash through our target (and more!) to help us champion a world where everyone affected by a rare condition feels connected, empowered, and supported?

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

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 @BigGive #ChristmasChallenge are doubled!
https://t.co/oGcUS5cEgb

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

We're just £300 away our #RareTogether @BigGive #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. 🧡
https://t.co/oGcUS5cEgb

[Big Give @BigGive]

Good morning! We’re in the final stretch of the #ChristmasChallenge.

There’s still £6m+ in match funds to double your donation, and many charities are so close to their targets.

Doubling ends 12pm tomorrow (or when funds run out).

Donate now: https://t.co/dCMwLpDUhK

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

We need your help! 🙏
We’re taking part in the @BigGive #ChristmasChallenge - until 9 Dec donations are DOUBLED! 🙌
Your gift will bring joy, connection & confidence to children, young people & families on the, otherwise lonely, #RareDisease journey 🧡
https://t.co/oGcUS5c6qD

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

Rare Together - Double your donation in CamRARE's match funding campaign - https://t.co/AdaU9akXhN

[Big Give @BigGive]

The 2025 #ChristmasChallenge is LIVE!

Until 9th December, every donation you make can be doubled. With over 1500 charities to choose from, that’s double the support for thousands of people across the world. Visit https://t.co/gWIHLKdHC5 to support a charity today. #GivingTuesday

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

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 @BigGive #ChristmasChallenge are doubled!
https://t.co/oGcUS5cEgb

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

Get ready to double the difference!

Next week (2–9 Dec), donations made via CamRARE's BigGive #ChristmasChallenge portal are doubled!

Your gift this Christmas will help families find connection, community & people who truly understand.
#RareTogether

https://t.co/oGcUS5c6qD

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

CamRARE's Network News - November 2025 - https://t.co/uRSCEnB8La

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

Highlights from #RAREsummit25 are in!
This video truly captures the spirit of the event!
There's more on the way - we’ll be posting snippets and session videos on our YouTube over the coming weeks, so make sure to subscribe and stay tuned.
https://t.co/piWaOSL97y