Cambridge Rare Disease Network

16/06/2026

It’s your last chance to grab a bargin price ticket for

Our early bird ticket prices end at 5pm this Friday (19th June), so now is the time to secure your spot in Cambridge or online.
https://raresummit26.eventbrite.co.uk/?aff=socials

The agenda is taking shape with some great presentations and panels sessions on rare disease policy, innovation and life with rare. Watch this space, sign up to our newsletter or keep an eye on our website for more.

12/06/2026

The theme of this Carers Week is "Building Carer Friendly Communities"

It’s brilliant to have this report from Carers UK’s to share, which provides organisations and service providers positive direction and practical actions they can take to better support the many carers in our communities. Please take the time to read through and see what changes you can make to enable carers.

We would also like to thank our own wonderful community of carers. Despite managing your own challenges and often being overwhelmed, you continue to support and signpost one another and generously share your experiences with us. You are amazing advocates for the rare community and your insights help CamRARE better understand the challenges families face, and help guide our advocacy work to where it is needed most.

is here!

Join thousands of individuals and organisations taking action to ensure more communities understand, recognise, and empower unpaid carers.

Get involved and together let’s build carer friendly communities across the UK.

Thank you TSB for being our headline sponsor this year, and to everyone taking part.

Carers Week is made possible through Carers UK working together with six other major charities: Age UK Carers Trust The Lewy Body Society ME Association MND Association Rethink Mental Illness

05/06/2026

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 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 diseases.

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

If you’d like to bring your poster to exhibit, please complete this form and we will be in touch with more information on recommended content and format: https://forms.gle/MWv7ieZE6n7sZ7SD9

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/

04/06/2026

Day 2 at in Prague!

Our CEO, Sarah, and Chair of Trustees, Emma, are back at the conference today, sharing our poster on the Rare Disease Research Network.

The networking has been incredible, with inspiring conversations and new connections across the rare disease community with people who are passionate about driving progress in this space. We've been discussing opportunities for collaboration, future plans, and how we can collectively influence positive change across the rare disease landscape. The energy, innovation, and commitment within this community continue to inspire us.

If you're attending in person, come and visit us at Poster 26 at 11:00am. We'd love to meet you and hear about your work.

If you're joining virtually, please connect with us through the conference direct chat.
Let's connect, collaborate, and contribute to a stronger rare disease community. because we're stronger together.

A huge thank you to EURORDIS-Rare Diseases Europe for hosting such a fabulous conference and creating a platform that brings together so many dedicated people committed to improving the lives of those affected by rare diseases.

01/06/2026

Last week, the MHRA published a draft of their new UK Rare Disease Therapies Regulatory Framework, and opened an accompanying public consultation. This is such an important step to improving access and outcomes for patients, and the consultation provides a really exciting opportunity to feed into the regulatory landscape around the development of medicines and therapies for rare disease.

In order to support as many people as possible in our network to have their voices heard, as easily as possible, CamRARE plans host a workshop to gather your feedback.

We’ll discuss key challenges and priorities, how future regulation can better support fair access, innovation, safety, and patient-centred care.

More details of how to sign up for our workshop will follow soon.

28/05/2026

We’re really looking forward to attending the EURORDIS-Rare Diseases Europe Conference in Prague next week, where Sarah Baker, CamRARE CEO, and Emma Green, our Chair of Trustees, are excited to be presenting and discussing the CamRARE Rare Disease Research Network during the poster sessions.

This year’s ECRD theme, “Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases,” feels especially important as we work collectively to ensure that policy, research and lived experience are better aligned to real-world needs across the rare disease community.

“As I’m newly in post as CEO of CamRARE, I’m particularly looking forward to the opportunity to connect with colleagues across the rare disease space, listen and learn from different perspectives, and begin building connections across the community, and further share the important work we are doing, including our work connecting across the different groups at our on 7 October.” - Sarah Baker, CamRARE CEO

Let us know if you’re attending, as it would be great to meet, exchange ideas, and start building connections across the community.

21/05/2026

One of the biggest highlights on the horizon at CamRARE is our flagship thought leadership event: RAREsummit26.

RAREsummit26 brings together the entire rare disease ecosystem in one room, including patients and families, researchers and academia, industry and biotech leaders, health system leaders and policy makers, alongside rare disease charities and advocates.

It is far more than just a conference. RAREsummit26 is a space to learn, share ideas, build meaningful relationships, and create real momentum for change. It provides an opportunity to hear from inspiring voices across the sector, discover new thinking and innovation, and connect with people who are equally passionate about improving outcomes for the rare disease community.

“One of the things that excites me most is the potential for collaboration far beyond the summit itself. Whether organisations are looking to connect with new partners, explore joint initiatives, support patient-centred innovation, or become more involved with our wider work at CamRARE, this event creates the space for those conversations to begin.

Early bird tickets are now available, and we are also finalising the last few speaker opportunities within the programme. We are keen to hear from organisations interested in exhibiting, sponsoring the event, or exploring wider collaboration opportunities with us. Please get in touch with me.

I’m incredibly excited about what’s ahead for CamRARE and the wider rare disease community and this feels opportunity to connect and look ahead for 2027.”

- Sarah Baker, CamRARE CEO

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

13/05/2026

Yesterday, Helen, our Operations Manager, and Sarah Baker, our new CEO, had an inspiring and thought-provoking day at the LifeArc Translational Science Summit 2026 . It brought together leaders, researchers, advocates, patients, clinicians, charities and organisations from across the rare disease and health innovation community.

The summit explored a wide range of important topics including rare disease regulations, the evolving Rare Disease Action Plan, AI as a medical device, personalised medicines, and the opportunities and challenges within rare disease research and innovation.

We were particularly inspired by the opening reflections from Ian Gilham, Chair of Trustees, and Dr Sam Barrell CBE, CEO at LifeArc, who shared LifeArc’s vision around igniting innovation and turning discovery into impact. The conference closed with a powerful talk from Julian Vitarello, Mila's Miracle Foundation reminding everyone why collaboration and urgency matter so deeply in the rare disease community.

Alongside the learning, one of the most valuable aspects of the summit was the opportunity to connect with others across the sector, strengthening relationships and building new collaborations that can help improve outcomes for people living with rare conditions.

A huge thank you to LifeArc for hosting such an impactful event and for creating a space that encouraged openness, learning and collaboration across the rare disease ecosystem.

12/05/2026

Living with, or caring for someone who has, a rare condition has a profound emotional toll, that is too often unsupported. When mental health is overlooked, physical health is impacted too, creating a cycle many in the rare disease community know only too well.

This Mental Health Awareness week we are looking back at the powerful, honest reflections we heard at which clearly illustrate why supporting mental health must be intrinsic to holistic rare disease care.

Read our blog (with link to the fireside chat featuring Tom Staniford, Kelly Kearley & Max Fisher, chaired by CamRARE trustee Loretta MacInnes) here:
https://www.camraredisease.org/mental-wellbeing-raresummit25/

Join us at on 7 October, in Cambridge or online, to continue these conversations: https://raresummit26.eventbrite.co.uk/?aff=socials

05/05/2026

Can you help us spread the word about our patient centred rare disease conference?

Do you have a great organisation or campaign you'd like to put in the spotlight?

Become a media partner for our ! Expand your network through ours, put your organisation before a broad global audience and help us reach more people who need to know about rare.

We're stronger together!

Complete this Expression of Interest form to find out more: https://docs.google.com/forms/d/e/1FAIpQLSdJPjUDAKIT8w4Blc1Kh3CmGgWDduomZkly2_gJX2ZqMzLy8w/viewform