Title xx Improving the experience of people living with rare diseases

Title xx Improving the experience of people living with rare diseases

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Overview

What xxx can deliver for you.

xxxx offers innovators with great ideas or established products a unique opportunity to access feedback, insight and ongoing expert support around how their innovation could be developed and supported for adoption in the NHS and the healthcare system.

Excitingly, three to five innovators will get access to 300 great minds in rare diseases – including patients, advocates, healthcare professionals, investors, researchers, academics and leaders – to exchange ideas and create opportunities at Cambridge Rare Disease Network’s (CRDN) RAREsummit on 7 October 2021. By enabling knowledge and experience to be shared RAREsummit helps facilitate the journey towards better diagnosis and treatment and support for patients and their families is smoother and more certain.

The power of convening the right people in the right environment could be a defining experience for you and your innovation. Your innovation will inspire others and their collaboration will in return inspire you. The result, great ideas being turned into positive health impact for people living with rare diseases.

Can you help people like Tristan?

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 CRDN’s work with Tristan here.

Improving the experience of people living with rare diseases.

We believe strongly that people affected by rare conditions and the professionals who work with them can form a powerful voice influencing innovation and service delivery. In response we have developed three statements which we are inviting innovators and organisations to respond to with innovative approaches and solutions. Each of the statements was created from insights gleaned as a result of a survey collaboration between Eastern AHSN and CRDN early in 2021.

Can you help solve one these challenges?

  • 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?

We’d love to hear about your great idea.

If you’ve got a great idea or innovation that responds to one (or more) of our questions 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. It doesn’t matter if some of the questions don’t apply to you right now, we are still keen to learn more and are committed to offering support to all the innovations we learn about.

  • Let us know more by 7 September
  • 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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What happens next?

All the responses we receive will be reviewed by an expert panel, including a patient representative. The panel will score each response and will select between three and five innovations for the chance to present to CRDN’s RAREsummit audience on 7 October. This will be an opportunity to access feedback, insight and ongoing expert support around how the innovation could be adopted and spread in the NHS and the healthcare system.

The Eastern AHSN team will help co-ordinate this process and can assist your presentation preparation. Responses that have been selected for RARESummit will be notified on the xxx of September.

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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 xxxx please email innovator.enquiries@eahsn.org, including xxxx in the email subject line.