Innovation challenge: rare diseases

We’ve partnered with the Cambridge Rare Disease Network (CamRARE) to understand where innovation can improve the lives of people affected by rare diseases. Utilising the results of a survey across the rare disease community and the government’s latest policy publications, we’ve identified three significant healthcare challenges faced by people with rare diseases and their families. We’re now inviting innovators to share their solutions to these challenges and submit them to our Innovation challenge: rare diseases.

As a result of engaging with and listening to the rare disease community Health Innovation East has partnered with the Cambridge Rare Disease Network (CamRARE) to characterise three innovation challenge statements which we're asking the innovation community to help us solve. If you have a great idea, product, service or technology that could deliver a positive health impact for people affected by rare diseases we want to hear from you.

Our challenge statements:


How might we use digital technology or AI to improve equity of access to clear, reliable information about rare diseases or genomic testing for people living with rare diseases, family members and healthcare professionals?


How might we use AI or digital technology to improve coordination of care for people living with rare diseases – including the transition of young people from paediatric services into adult health services?


How might we use digital technology to maintain wellbeing and enhance mental health support for people living with rare diseases?

Improving the experience of people affected by rare diseases

Submissions to this competition will be judged and scored by an expert panel, and the five highest scoring innovations will be invited to present their solution at Cambridge Rare Disease Network’s (CamRARE) RAREsummit2023 on Thursday 12 October 2023. The overall winner will receive tailored support from Health Innovation East and CamRARE to develop the innovation commercially and / or into the healthcare system.

RAREsummit2023 unites patients, advocates, experts and leaders to address challenges faced by people affected by rare diseases. The summit will be attended by more than 300 patients, advocates, healthcare professionals, policy makers, biotechnology, pharmaceutical and startup leaders, investors, researchers, and students – each leaders in the rare disease space. This is a unique opportunity to gain feedback, build advocacy and identify next steps for you and your healthcare innovation.

Submit your innovation before midday on 4 September, 2023 using the link above to enter this competition.

Could your idea change lives?

One in 17 people will develop a rare disease at some point in their lives – that’s 3.5 million in the UK alone and 350 million worldwide. Most of these diseases manifest in early childhood and many are life-limiting conditions.

CamRARE brings together stakeholders from research, industry, business, healthcare and patient advocacy groups in a spirit of collaboration and understanding; providing opportunities to share, learn, engage and be innovative together to improve the lives of those affected by rare disease.

At Health Innovation East we have a wealth of expertise in helping innovators turn their ideas into positive health impact. We know that great ideas only make an impact when they are put into practice; which is why we are supporting this unique opportunity to identify innovations than can have a dramatic impact on the millions of people living with or supporting someone with a rare disease.

What if ?!

What if we were able to share information with the power to revolutionise the current rare disease landscape? What if we could provide solutions to patients now, answering their pressing questions about their disease, care, and treatment? What if we could ensure that patients and advocates played an equal and vital role in the development of drugs, assistive technologies, healthcare and policy? Rare disease patients and their families want to be directly involved and share their lived experiences to help companies, researchers, healthcare professionals and policy-makers find answers and solutions.

Tristan’s story

10 year old Tristan has a rare disease called Russell-Silver Syndrome. The video below shares a glimpse of Tristan’s story. We are grateful to Tristan and his family and CamRARE for sharing this, you learn about their work with Tristan and families like his here.

Win an audience with the rare disease community

CamRARE’s RAREsummit2023 is the infrastructure that unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience the journey towards better diagnosis, treatment and support for patients and thier families is smoother and more certain.

On 12 October 2023, CamRare will hold their 6th RAREsummit – a flagship event that raises awareness of rare conditions and their impact, showcase examples of impactful collaboration, brings stakeholders together to drive partnering opportunities, share knowledge and skills and improves the lives of rare disease patients.

RAREsummit attendees Alastair Kent

If you’ve got a great idea or innovation that responds to one (or more) of our challenge statements, we want to hear from you via the engagement form below. 

    • Submit your solution by midday 4 September. Judging will take place between 4 September and 22 September.
    • Tick the boxes confirming that you are submitting your innovation as part of the Innovation challenge: Rare diseases and which challenge statement(s) you are applying to.
    • You can save an incomplete submission and receive an email link to return to the form.
    • Innovations must be submitted via the online engagement form in order to be considered.

Your privacy

Any information submitted to Health Innovation East will be treated in the strictest of confidence, in line with the organisation’s privacy policy and will be shared only with individuals directly involved in the submission review and judging process.

Contact us for more information

If you have any questions or would like to get in touch please email, including ‘CamRARE challenge’ in the subject line.

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