Innovation challenge: rare diseases

We’ve partnered with the Cambridge Rare Disease Network (CRDN) to understand where innovation can improve the lives of people living with rare diseases. From responses to a patient and family members questionnaire at CRDN Rarefest20, we’ve identified three significant healthcare challenges faced by people living 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.

By engaging with and listening to the rare disease community, Eastern AHSN have worked with the Cambridge Rare Disease Network to characterise three healthcare challenge statements which we’re asking the innovation community to help us solve. If you have a great idea that could make a positive health impact, we want to hear from you.

Our challenge statements:

  • How might we use digital technology or AI to improve access and availability of clear, reliable health information about rare diseases for patients, family members, healthcare professionals and/or members of the public?
  • How might we use AI and digital technology to improve coordination of care for people living with rare diseases?
  • How might we use digital technology to maintain wellbeing and reduce mental fatigue for people living with rare diseases?

Improving the experience of people living with rare diseases

Please note that the deadline for this challenge has now passed.

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 (CRDN) RAREsummit on 7 October 2021. RAREsummit will be attended by over 300 patients, advocates, healthcare professionals, investors, researchers, academics and 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 7 September 2021 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.

Cambridge Rare Disease Network 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 Eastern AHSN 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.

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 CRDN for sharing this; you can read more about CRDN on their website, and learn about their work with Tristan and families like his here.

Tuning in to community insight

One of Eastern AHSN’s priorities is to support the development of innovations which improve the everyday lives of people living with rare diseases.

Through a partnership with CRDN to sponsor and participate in Rarefest20 (CRDN’s biennial conference and exhibition), Eastern AHSN was able to survey and gather lived experiences and insights to help understand more about the challenges faced by people living with rare diseases.

The survey ran from 22 November 2020 to 6 January 2021 and achieved 37 individual responses. From these responses, we’ve identified three significant healthcare challenge statements that address challenges commonly face by faced by people living with rare diseases and their families.

Win an audience with the rare disease community

CRDN’s RAREsummit21 is the infrastructure that unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases.

On 7 October 2021, CRDN will hold their 5th RAREsummit – a flagship event that aims to raise awareness of rare conditions and their impact, showcase exemplars of impactful collaboration, bring stakeholders together to drive partnering opportunities, share knowledge and skills and improve the lives of rare disease patients.

This year’s event is expected to attract 300+ biotechnology, pharma and startup leaders, innovators, patients and patient group CEOs, healthcare professionals, policy-makers, CROs, researchers, investors and students.

RAREsummit attendees Alastair Kent

Please note that the deadline has now passed

If you’ve got a great idea or innovation that responds to one (or more) of our challenge statements, we still want to hear from you via the online engagement form below. However, now that the deadline has passed we cant consider any more entries for inclusion at RAREsummit21.

    • Submit your solution by midday 7 September. Judging will take place between 8 and 20 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.

Your privacy

Any information submitted to Eastern AHSN 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 process.

Contact us for more information

If you have any questions or would like to get in touch please email [email protected], including ‘Innovation challenge: Rare diseases’ in the subject line.