Cambridge Rare Disease Network

15/10/2026

Last week, the rare community came together at to share ideas, make meaningful connections and spark new collaborations.

Take a moment to relive the spirit of an amazing day in our highlights video, and watch this space over the coming weeks for more videos and insights.

https://youtu.be/XxGlexgJ7q8?si=S46O8eEmzd9Kwrtq

On 7 October 2026, RAREsummit26 brought together an inspiring commu...

09/10/2026

It's a wrap!
A huge thank you to everyone who joined CamRARE for
The day was all about community, connection and collaboration. Bringing together the rare disease community to share ideas, make connections and inspire positive change.
Thank you to our speakers, panelists, workshop leads, sponsors, partners, exhibitors, patients, families, advocates and everyone who contributed to making the day possible.
The conversations don’t end here. Let’s keep them going and turn connection into impact.
Make sure to sign up to our newsletter for more insights from the day, and news of RAREsummit27... http://eepurl.com/duh0NH

06/10/2026

There is only 1 day to go until on 7 October!

We've sold out of in person tickets, however, what makes this year especially exciting, is that we've gone hybrid, meaning that we can welcome even more people to be part of the day, from wherever you are in the world!

With an online ticket you will be able to explore the online exhibition and posters, have access to all talks and panels in the main auditorium and larger breakout room, plus live access to an exclusive 60-minute research spotlight. All attendees (in person and online) can connect with each other and join discussion groups via Swapcard and take part in Q&A and polls via Slido.

We can’t wait to see the connections, ideas and collaborations that emerge from the day.

Come for the insight. Make the connections. Leave inspired to make a difference.

Online ticket sales will remain open until 5pm today, so make sure you don't miss a great day - book now: https://raresummit26.eventbrite.co.uk/?aff=socials

28/09/2026

Did you know that only 5% of rare diseases have an approved treatment?

Our sponsor Healx are using pioneering AI and other frontier technologies to redevelop, combine and enhance known compounds, to build a pipeline of new and effective therapies for rare disease patients.

Tim Guilliams, co-founder and CEO of Healx, will be joining an ‘Innovation Showcase’ panel at the summit on Wed 07 Oct and sharing more about their work.

A huge thank you to Healx for your sponsorship and support, enabling us to bring our community together for these crucial discussions.

To find out what else will be on, and to secure your tickets, visit our RAREsummit event pages: https://www.camraredisease.org/raresummit26/

23/09/2026

Meet CamRARE trustee Catherine, and hear why she thinks you should come to RAREsummit26 on 7 October 2026!

Hope to see you there!

Book your tickets to come in person or online: https://raresummit26.eventbrite.co.uk/?aff=video

22/09/2026

A massive thank you to our media partners for your support in spreading the word about our exciting on 7 October 2026, in Cambridge UK and Online.

We’d like to give a big shout out to…

Eastern England Secure Data Environment - providing secure access to de-identified NHS patient data to support research that improves disease prevention, diagnosis and treatment.

Bio Partner UK - the independent trade organisation that supports international trade for UK life science companies.

Patient First Research - connecting patients and caregivers with ethical paid medical research opportunities. By sharing real-life experiences through patient experience research, our community helps researchers improve treatments, services, and access to care.

Use My Data - the only independent UK movement of patients, relatives and carers focussed on the use of patient data to save lives and improve outcomes.

Check out their profiles to learn more about the amazing work they do!

For more info on what’s going to be on at RARESummit26, visit our website and book your tickets: www.camraredisease.org/raresummit26

21/09/2026

Watch the highlights from last year to get a flavour for what an incredible day is in store at
To join us on on 7 October, in Cambridge or online, book your tickets here: https://raresummit26.eventbrite.co.uk/?aff=video

18/09/2026

Hear from our trustee Bill about why you should come to RAREsummit26 on 7 October!

To join us in Cambridge or online, book here: https://raresummit26.eventbrite.co.uk/?aff=video

Or check out our website for more details: camraredisease.org/raresummit26

17/09/2026

We are delighted to announce LifeArc as platinum sponsor for enabling us to bring our rare community together.

LifeArc helps turn promising science into patient impact, with a focus on rare diseases and drug resistant infections. Leading, funding, partnering and convening and bringing expertise and resources to advance innovation where progress might otherwise stall.

To connect and join the important conversations on 7 October, either in person or online, make sure to book your ticket for RAREsummit now.
https://raresummit26.eventbrite.co.uk/?aff=socials

15/09/2026

The final reports are now live 📣

We were proud to have been a part of this important and insightful project.

RareCare is an NIHR-funded evaluation of the UK Rare Diseases Framework and England’s Rare Diseases Action Plans. The programme brings together lived experience, healthcare professional insight, indicator development and routine health data analysis to explore what progress in rare disease policy looks like and how it could be measured in future.

The reports highlight important progress in rare disease policy, research and infrastructure. They also show that policy ambition does not automatically translate into improved experiences for people living with rare diseases and their families.

A key message from RareCare is that future rare disease policy needs to consider:
• system-level change
• service-level delivery
• lived experience and family impact

This matters because completing actions is not the same as knowing whether diagnosis, care, support and access are improving in people’s lives. RareCare is an important evidence base for the next phase of rare disease policy.

Read the full reports here: https://rarecare.online

Join the RareCare webinar to hear what's next:

RareCare: What Happens Next? Turning Evidence into Action
13:00 to 14:00 - 17 September 2026
https://us02web.zoom.us/meeting/register/NXOMoQWuTgyNKi_QA2yC4Q