Cambridge Rare Disease Network

18/08/2026

Who might you bump into at on 7th October?

Researchers, clinicians, innovators, patient groups & people with lived experience of rare conditions will be coming together providing a great opportunity to meet people living and working in different areas of the rare space.

There will be lots of opportunities to network — over coffee, at posters and exhibition stands, in informal meeting booths or ‘virtually’ via Swapcard.

Join us to catch up with familiar faces or make new connections, and be part of the conversations shaping the future of rare diseases.

Find out more on our website: https://www.camraredisease.org/raresummit26/

12/08/2026

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

We’d like to give a big shout out to…

GoPI3ks - a charity for those living with and affected by Segmental overgrowth in the PIK3CA gene, known as PROS (PIK3CA Related Overgrowth Spectrum)

BRITISH PORPHYRIA ASSOCIATION - supporting and educating patients, relatives and medical professionals, and promoting research about the porphyrias, a group of rare disorders that are usually inherited. They are broadly separated into acute and cutaneous (skin) depending on the types of symptoms.

Mast Cell Action - a UK-based charity supporting people affected by Mast Cell Disease. Founded and run by people who have MCAS or care for someone with MCAS, so they know exactly how it feels!

Alex TLC - the only charity in the UK that provides support and information to people affected by any of the 100 known leukodystrophy conditions, including some so rare they only affect one or two individuals.

Pop over to follow their profiles and learn more about the amazing work they do!

For more info on what’s going to be on at RARESummit26, and to book your in-person or online ticket, visit our website: www.camraredisease.org/raresummit26

05/08/2026

A massive thank you to our media partners for your support in spreading the word about our exciting hybrid event in Cambridge and online on 7 October 2026!

We’d like to give a big shout out to…

- a Welsh-based charity, run by patients, for patients, raising awareness and offering support for those with Ataxia.

- a global community where families, healthcare professionals and researchers work together to ensure people diagnosed with Nicolaides-Baraitser Syndrome have every opportunity to reach their full potential.

VascularVoice.org - who seek to connect everyone involved in and affected by vascular conditions, rare or common, forming a united body of support for vascular health.

AspergillosisTrust.org - who raise awareness of Aspergillosis, a rare, debilitating, and sometimes deadly, infection, to ensure everyone gets the right treatment quickly, to improve patient outcomes.

Pop over to follow their profiles and learn more about the amazing work they do!

To join us at RARESummit26 book your tickets now: www.camraredisease.org/raresummit26

03/08/2026

Have you booked your ticket for on 7 October 2026?

Tickets: https://raresummit26.eventbrite.co.uk/?aff=socials

Join us in Cambridge for a day of introductions, conversations and unique opportunities for cross-sector collaboration. Hear presentations and panel discussions, explore the marketplace of exhibitors and research posters and take part in interactive workshops designed to spark ideas and provide a catalyst for action.

The event is hybrid, so if you can't make it to Cambridge, you will be able to join all of the main auditorium content, take part in Q&A and polls, and connect with attendees and exhibitors, so that you can be part of the conversation wherever you are.

The programme is shaping up, so keep an eye on our website to see it unfold: https://www.camraredisease.org/raresummit26/

31/07/2026

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

We’d like to give a big shout out to…

The Children's Hyperinsulinism Charity - supporting individuals and families at every stage of their journey with hyperinsulinism, a rare but serious condition that affects how the body regulates blood sugar.

Pitt Hopkins UK - raising awareness of Pitt-Hopkins syndrome, a rare genetic syndrome caused by changes in the tcf4 gene, to support and advocate for families.

FOP Friends - furthering research into Fibrodysplasia Ossificans Progressiva (FOP) and related conditions by supporting current and future research projects, and support those living with FOP and their families.

CSF Leak Association - The Cerebrospinal Fluid Leak Charity - raising awareness of cerebrospinal fluid (CSF) leaks, to provide support to individuals and their families, and to secure diagnostic and treatment advancement.

Pop over to follow their profiles and learn more about the amazing work they do!

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

28/07/2026

Do you have a patient journey, research topic or rare disease focussed project that you would like to put in front of a diverse group of experts in rare disease?

We would love to showcase your poster at in Cambridge and online on 7th October 2026! Hosted by CamRARE, this one day summit brings together patients, advocates, experts, and leaders to connect, collaborate and address the challenges faced by people living with rare conditions.

Posters will be displayed in the conference centre networking space and will be available in a virtual exhibition space for online delegates to view.

If you’d like to exhibit your poster, please complete this form and we will be in touch with more information and advice about recommended content and poster format: https://docs.google.com/forms/d/e/1FAIpQLSdJPjUDAKIT8w4Blc1Kh3CmGgWDduomZkly2_gJX2ZqMzLy8w/viewform?usp=sharing&ouid=113127933293082021740

You can find out more about the event, and book your tickets, on our website - we look forward to welcoming you!

https://www.camraredisease.org/raresummit26/

17/07/2026

We know that attending events in person isn't always possible, which is why is going to be a hybrid event - giving you the flexibility to join us from around the world.

Our virtual experience has been designed to help you connect, collaborate and engage, not just watch, from afar.

We'll be using Swapcard to allow you to:
• Connect and network with delegates
• Join online discussions
• Explore the virtual exhibition
• Meet exhibitors
• Browse online poster presentations

And Slido to enable live interaction with:
• Polls
• Audience questions
• Q&A sessions

And of course, you'll have live-stream access to all main auditorium presentations and panel discussions, so you won't miss the biggest conversations of the summit.

Plus, join a dedicated virtual 'Research Spotlight' session featuring a series of short research presentations available exclusively to online attendees.

Whether you join us in Cambridge or online, RAREsummit26 is designed to bring our community together, wherever you are.

Book your ticket now: https://raresummit26.eventbrite.co.uk/?aff=socials

13/07/2026

We still have a few exhibitor spaces for on 7th October 2026 so there's no time to waste if you'd like to book your spot.

Hosted by CamRARE, this one day summit brings together patients, advocates, experts, and leaders to connect, collaborate and address the challenges faced by people living with rare diseases.

There is plenty of time being built into the programme throughout the day for networking and browsing the exhibition area. Online delegates will also be able to view exhibition stands and connect with you.

If you are interested in exhibiting please complete this expression of interest form and we'll get in touch to discuss the options: https://docs.google.com/forms/d/e/1FAIpQLSdJPjUDAKIT8w4Blc1Kh3CmGgWDduomZkly2_gJX2ZqMzLy8w/viewform?usp=sharing&ouid=113127933293082021740

You can find out more about the event, and book your tickets, on our website: https://www.camraredisease.org/raresummit26/

We look forward to welcoming you!

09/07/2026

What is the MHRA's draft UK Rare Disease Therapies Regulatory Framework all about?

What are the benefits, and what might be missing?

Read more about it in our latest blog, and join our workshop on 15 July, to delve in further and have your say in the consultation:

Delving into the MHRA's proposal of a new process to ease the process for developing new treatments for rare conditions

01/07/2026

Join us online, on 15 July, when we will be delving into the MHRA's draft document, UK Rare Disease Therapies Regulatory Framework, and asking the big questions.

The framework is such an important step to improving access to treatments for people with rare conditions, and we want to help our community take advantage of this exciting opportunity to feed into the MHRA's process.

At the workshop we'll discuss some of the key challenges and priorities to feed into our group response to the MHRA's public consultation, or to help you respond directly. We'd love to hear your thoughts on the main themes, and discuss areas that are important to you.

The workshop will run at three different times throughout the day, so book onto the one that suits you best:

Morning (10:00): https://rare-disease-therapies-regulatory-framework-workshop-1.eventbrite.co.uk
Lunchtime (12:00): https://rare-disease-therapies-regulatory-framework-workshop-2.eventbrite.co.uk
Evening (20:00): https://rare-disease-therapies-regulatory-framework-workshop-3.eventbrite.co.uk