RAREsummit25

CamRARE is a charity based in Cambridge, UK. We're fighting for 350 million forgotten patients worldwide living with a rare disease.  We hold educational and networking events to bring together all stakeholders to stimulate dialogue and collaboration. We support children and families locally who are impacted by rare disease.

Cambridge Rare Disease Network (CamRARE)

RAREsummit25 - the UK’s leading truly patient-centred rare disease conference

Wellcome Genome Campus Conference Centre

<h3>A Decade of Impact; A future of Possibilities</h3> <h4>On Thursday 6 November 2025, we will gather at the Wellcome Genome Campus for our 7th RAREsummit – a flagship CamRARE event gathering 300 great minds in rare diseases to make connections, exchange ideas and openly debate possibilities.</h4>CamRARE's RAREsummit25 welcomes and unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By reflecting on progress made, showcasing best practices and new developments, sharing knowledge and experience, and finding ways to work together, the journey towards better diagnosis, treatment and support for patients and their families is smoother and more certain.

<h2>New for 2025 - RAREsummit now livestreaming! </h2> <ul><li>In order to open RAREsummit25 up to our global community and those unable to travel, RAREsummit25 will be livestreamed from the main auditorium. Livestream tickets give access to the live event and allow attendees to interact through Slido - take part in the Q&A and polls throughout the day. Livestream content will be available on catch-up for ticket holders for 30 days following. </li></ul>

<h3>RAREsummit25 Highlights - see the full programme and speakers in the agenda section below</h3><ul><li>Celebrating a Decade of CamRARE – opening keynote sharing 10 moments of impact.</li><li>Legacy in Action – hear how past RAREsummit ideas and connections grew into real-world change in research, policy, and innovation.</li><li>Patient-Led Research &amp; Innovation – Rare Disease Research Network (RDRN) showcases and powerful case studies of patient-driven projects.</li><li>Technology for Rare Diseases – from re-imagining existing tech to exploring digital twins in healthcare.</li><li>Rare Diseases &amp; Human Rights – with the RDI–Lancet Commission, linking rights-based approaches to research, policy, and care.</li><li>Mental Wellbeing &amp; Rare Conditions – lived experiences, young adult voices, psychologists, and workplace perspectives.</li><li>Parents as Changemakers – balancing career, family, and rare disease advocacy, with insights from researchers, industry leaders and healthcare professionals.</li><li>Workshops &amp; Breakouts – interactive sessions on evidence for medicine access, digital twins, naming rare genetic diseases, and social listening.</li><li>Global Challenges – panels on global challenges in rare diseases and the future of rare disease innovation.</li><li>Networking &amp; Collaboration – dedicated spaces for connection, exhibitor showcases, posters, and a "Meet to Collaborate" zone.</li><li>Exclusive Extras – optional Wellcome Genome Campus tour and a 3 course networking dinner.</li></ul>

<h4>Why attend? Learn something new, be inspired, meet people, add value and collaborate.</h4><h4> </h4><ul><li>Build your network with 300 biotechnology, pharma and startup leaders, innovators, patients and patient group CEOs, healthcare professionals, policy-makers, CROs, researchers, investors and students assembled.</li><li>Meet, mingle and hold crucial discussions with potential partners from local and global arenas.</li><li>Take away practical strategies and fresh ideas.</li><li>Hear from and put questions to key opinion leaders from the patient, scientific, industry, medical, and policy sectors.</li></ul>

<h3>Networking Dinner</h3> As the sun sets on an inspiring day of bold ideas and promising connections, we invite you to gather for the grand finale.Raise a glass to 10 years of CamRARE — a decade of driving change, championing collaboration, and giving voice to the rare disease community.Enjoy a delicious three-course fine dining experience at Hinxton Hall, on the Wellcome Genome Campus, with a glass of wine or a soft drink on arrival and an opportunity to keep the conversations going!Let’s toast to the past, the present, and the future we’re building together.

Agenda

Visit exhibitors & posters, grab a tea/coffee, browse, connect. 

Registration & Networking

Celebrating 10 Years of CamRARE – opening keynote sharing 10 moments of impact.

Ten Moments

Since 2015, RAREsummit has brought together changemakers from across the rare disease ecosystem – hear how past RAREsummit ideas and connections grew into real-world change in research, policy, and innovation.

RAREsummit Legacy in Action

An Introduction to The Rare Disease Research Network- Turning Research on its Head. 

RDRN Showcase – Patient-Led Research & Innovation

Think patient-led research is too risky or difficult? This session reveals how collaboration across patients, clinicians, and engineers worldwide is transforming treatment for a rare, life-threatening breathing disorder. 

Breathing Life into Existing Technology - Patient-Led Innovation

Networking Break

Making Rare Disease Visible Globally - Exploring Rare Diseases Through the Lens of Human Rights with the RDI–Lancet Commission. 

Exploring Rare Diseases Through the Lens of Human Rights

This session highlights how patient health and care passports are proving to be powerful tools for clearly and effectively communicating information about rare conditions. Attendees will hear from CamRARE’s Rare Patient Passport creators and users, alongside patient groups, healthcare providers, and digital platform partners, about how the passport is supporting patients across healthcare, social care, educational settings, and everyday life.

Communicating our Rare Conditions: Patient Passports for Rare Journeys

Explore the potential of digital twins — virtual simulations of patients — to transform rare disease research, care, and innovation. This session invites discussion on how technology could predict outcomes, test treatments, and improve patient journeys, while examining opportunities, challenges, and ethical considerations.

Digital Twins in Rare Diseases

Visit exhibitors & posters, grab a bite to eat, browse, and connect. 

Lunch Networking Break

Hear from people living with a rare condition, carers, and experts on the challenges, strategies and insights for supporting mental health while living with a rare condition

Navigating Mental Wellbeing with a Rare Disease 

Hear from rare people and parents who are using their careers in genetics, research, education, and policy to influence better outcomes for people living with rare disease — all while balancing advocacy and family life.

Rare Perspectives: Balancing Career, Family & Rare Disease Advocacy

Join this interactive workshop to explore the challenges patient advocates face in generating evidence and collaborate on ideas for an ideal toolkit to drive evidence-based advocacy.

Generating Evidence to Support Access to RD Medicines. Creating The Toolkit

A workshop led by UNIQUE exploring the history, complexities and opportunities when naming rare genetic conditions

What's in a Name? Naming Rare Genetic Diseases

RareMinds is exploring whether social listening can reveal new insights into the mental health challenges of rare diseases. This session asks the community to weigh potential benefits against ethical concerns and consider how such research could be used.

Should we listen? Social Listening Research in Mental Health & Rare Conditions

Leading experts share breakthroughs set to shape the future of rare disease — from epigenetics for faster diagnosis, to pioneering mitochondrial therapies, to unlocking the dark genome. Join this forward-looking panel to explore the discoveries that could redefine research, treatment, and care in the next ten years.

The Next Decade of Rare Disease Innovation

Closing words: Today’s shared hope and opportunities & CamRARE Strategy Launch

A guided tour of the Wellcome Genome Campus.  Limited to 30 places for those attending the post summit dinner.

Wellcome Genome Campus Tour

As the sun sets on an inspiring day of bold ideas and promising connections, we invite you to gather for the grand finale. Raise a glass to 10 years of CamRARE — a decade of driving change, championing collaboration, and giving voice to the rare disease community.
Enjoy a delicious three-course fine dining experience at Hinxton Hall, on the Wellcome Genome Campus, with a glass of wine or a soft drink on arrival and an opportunity to keep the conversations going!  Let’s toast to the past, the present, and the future we’re building together.

Networking Dinner

Explore how rare diseases intersect with human rights, drawing on insights from the RDI–Lancet Commission. Join the conversation on how rights-based approaches can shape research, policy, and care for people living with rare conditions.


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RAREsummit25

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