Tune in: Rare diseases

Tune in: Rare diseases

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Overview

Improving the experience of people living with rare diseases

 

Could your idea change lives?

In the UK, despite over 3.5 million people currently diagnosed with a rare disease, only 5% will have a treatment. But there is an opportunity to alleviate their condition or make their lives easier through better use of technology or how we deliver services.

We would like to hear from you wherever you are in the innovation life cycle. Whether you are a clinician, parent or established innovator with an early stage idea, or have an innovation already which could be repurposed or adapted to meet these challenges, Eastern AHSN want to hear from you.

Our role is to provide expert support and guidance on developing your idea so that it could make an impact on the lives of patients. By applying to Tune in: Rare diseases, your innovation will be reviewed by our experts to see how we can help you maximise patient impact and help you grow your business.

Tristan’s story

Tristan is 10 years old and has a rare disease called Russell-Silver syndrome. The video below shares a glimpse of Tristan’s story and the day-to-day experience of his family, we are grateful to be able to share it with you. You can read more about Cambridge Rare Disease Network (CRDN) on their website and their work with Tristan here.

Tuning in to community insight

We have developed three challenges in partnership with the Cambridge Rare Disease Network and the rare disease community based on feedback from people living with rare diseases:

  • 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?

All solutions will be reviewed and Eastern AHSN will work with you to help turn your great idea into positive health impact, whatever stage of your innovation journey.

An audience with the rare disease community

We have an opportunity for up to five innovators to share their solutions at CRDN’s RARESummit on 7 October 2021, including over 300 patients, advocates, healthcare professionals, investors, researchers, academics and leaders. Gather valuable feedback, create connections and tell your story to help take the next step in changing lives through technology.

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Enter by 7 September 2021

If you’ve got a great idea or innovation that responds to one (or more) of our challeges, we’d love to hear from you via the form below. We are keen to learn about ideas and innovations at different stages of development so please complete as much of the form as possible, even if some of the questions don’t apply to you right now.

  • Submit your solution by 7 September 2021
  • You can save your response and return to it anytime
  • Please share our questions with others who have ideas or innovations to contribute

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Your privacy

Any information submitted to Eastern AHSN will be treated in the strictest of confidence, in line with our 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 about Tune in: Rare diseases please email innovator.enquiries@eahsn.org, including Tune in: Rare diseases in the email subject line.