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News

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

Infographic for RareChat | Raising awareness with the general public
10 February, 2021 / Findacure News

February’s RareChat has been announced!

Our next RareChat is here! Join us on Wednesday, 17th February, to discuss raising awareness with the general public. Come hear how your fellow patient group leaders are working to get the general public to care about rare. Register now!
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[image description: infographic saying "The Winner is" with the Student Voice Prize logo on the envelope]
2 February, 2021 / Findacure News

The 2020 Student Voice Prize winners are announced!

After three months and many impressive submissions and patient group pairings, we finally have our four 2020 Student Voice Prize winners! Please say hello and congratulations to our 2020 overall winner and three 2020 runner-ups!
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[image description: infographic for Findacure's next RareChat | Fostering inclusion and engagement within your community]
19 January, 2021 / Findacure News

Our first RareChat of 2021 is here!

Join us on Wednesday, 27th January, from 2pm - 3:30pm to discuss inclusion and engagement within your community. Claim your free ticket now to share your struggles and insights with your fellow patient group leaders and come away with new ideas on how to make your group more inclusive!
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What the new UK Rare Disease Framework means for you infographic
15 January, 2021 / Rare Disease World

Find out what the new UK Rare Disease Framework means for you

If you haven’t had a chance to read the new UK Rare Disease Framework in full, we’ve summarised its contents for you in a simple, easy-to-read blog. Learn what the UK Rare Disease Framework means for you and let us know your thoughts in the comments or by tagging us on social media!
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Sylvie awake
14 January, 2021 / Findacure News

Our CEO, Dr. Rick Thompson, welcomes a new baby girl!

Our CEO, Dr. Richard Thompson, has just welcomed a new baby girl! We'd like to introduce you all to little miss Sylvie!
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[image description: photo of a woman smiling]
14 January, 2021 / Findacure News, Rare Disease World

The new UK Rare Disease Framework is here!

If you haven’t had a chance to read the new UK Rare Disease Framework in full, we’ve summarised its contents for you. Learn the new UK Rare Disease Framework's four key priorities and five underpinning themes now!
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Natural history studies for rare diseases: the importance of collectin real-world data from patients to enhance the development of therapies banner image
4 January, 2021 / Findacure News

Our first webinar of 2021 is on natural history studies for rare diseases with Healx!

Findacure has partnered with AI-company Healx, to bring you an informative webinar on natural history studies in rare diseases. Join us on 20th January at 3:00pm GMT to learn how to overcome challenges when designing meaningful natural history studies and more!
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[image description: a photo of two women standing next to a banner stand which advertising the Breaking Down Barriers project]
15 December, 2020 / Findacure News

Next Online workshop| Representing your community: engaging with ethnic minority communities

Findacure is delighted to announce its next online workshop, which will guide patient groups through improving engagement with ethnic minority groups to better represent and serve their respective rare disease communities.
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Findacure team
1 December, 2020 / Findacure News

We are growing our team!

Findacure is recruiting a Projects Administrator to help us deliver our expanding programme of events and projects. Apply by the 15th December for your chance to join our team!
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[image description: infographic for RareChat | Virtual Events]
27 November, 2020 / Findacure News

New RareChat announced!

Just in - Our next RareChat | Virtual Events is happening on Wednesday, 9th December at 11am GMT! We will be discussing your own experiences attending, running and planning virtual events.
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