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News

Keep up-to-date with our latest news, including event announcements, project updates and recruitment, on this page

22 September, 2021

Rare Chat | Patient group experiences in research and trial design

During our next RareChat on Tuesday 5th October at 1pm we will be discussing the role that patient groups can play in the design of research projects and clinical trials.
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15 September, 2021 / Findacure News

Our CEO has done it again! We’re featured in Mediaplanet’s Rare Diseases Campaign

It's that time of year again! Mediaplanet and Health Awareness' Rare Diseases Campaign is back and our CEO, Dr. Rick Thompson, is featured amongst it for the third year in a row. Learn what Rick discussed in his article now!
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8 September, 2021 / Home Page

The Student Voice Prize is now accepting applications from patient groups for its patient group pairing scheme!

The Student Voice Prize Patient Group Pairing Scheme gives medical students, nurses and biological sciences undergraduate and masters students the chance to be paired with a rare disease patient group to learn first-hand about their condition and patient experience.
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8 September, 2021 / Home Page

Webinar | Measuring Quality of Life

This webinar will explore the ways to measure quality of life in rare diseases for the purpose of health technology assessment, and the ways that patient organisations can get involved in the process.
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2 September, 2021 / Findacure News

We’re launching a brand new project: Recruiting a Rare Board!

Recruiting a Rare Board is a free programme designed by Findacure and Getting on Board – a charity specialising in trustee recruitment. It aims to help you recruit new board members in a professional manner, ideally leaving you with a group of interesting, skilled, and diverse people applying to help you deliver your patient group’s mission. Applications open now, but hurry - the deadline is 19th September!
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1 September, 2021 / Findacure News

We’ve got moos

You may have seen the Cows about Cambridge and walked their moo-vellous art trail, but what you may not have known is that our Projects Coordinator, Philippa Norman, entered a competition to win one of their mini moos and WON! Learn more now.
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Community Fundraising graphic
20 August, 2021 / Findacure News

Our next online workshop is…Community fundraising for rare disease patient groups: through COVID-19 and beyond

We are delighted to announce our next online workshop "Community fundraising for rare disease patient groups: through COVID-19 and beyond!" Join us as we delve into the basics of community fundraising over three, jampacked days on 21st to 23rd September. Learn more!
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Findacure's 2019 - 2021 Patient Engagement Committee members. On the back row from left to right: Sandra, Sue, Wendy, Laurence, Libbie (Findacure), Rick (Findacure), Taryn (Findacure) and Alan. On the front row: Sally and Mary Rose (Findacure).
29 July, 2021 / Findacure News

We’re recruiting for our Patient Group Engagement Committee!

Applications are now open for the 2021-2023 term of our Patient Group Engagement Committee. Become a Findacure advisor and help shape the future of our events and projects.
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28 July, 2021 / Findacure News, Rare Disease World

New interactive webinar announced from Realise Advocacy: ‘Navigating HTA’

Findacure is delighted to announce an exciting new partnership with Realise Advocacy!
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27 July, 2021 / Findacure News

Get answers from the experts!

The team at Healx wants to hear your questions on drug redevelopment, clinical trials, AI technology or anything else in between! Submit your questions now and have them answered in a blog post next month.
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