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News

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

26 May, 2021 / Findacure News

Recruitment for the sixth round of our Patient Group Mentoring Programme is now open!

Looking to build or develop your patient group? Searching for opportunities to utilise your skills to benefit others? Sign up today to be a mentee or a mentor on the sixth round of our Patient Group Mentoring Programme! Applications close Sunday 4th July.
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NF2 BioSolutions UK & Europe, together with NF2 BioSolutions, are excited to announce a new transatlantic partnership
22 May, 2021 / Rare Disease World

NF2 BioSolutions UK & Europe and NF2 BioSolutions announce a new transatlantic partnership!

Today is NF2 Awareness Day and NF2 BioSolutions UK & Europe has incredible news for all those affected by NF2!
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RareChat | Patient group experiences of using data
12 May, 2021 / Findacure News

Next RareChat = Patient group experiences of using data!

Our next RareChat will focus on patient group experiences of using data! Join us on Wednesday 26th May at 10am to discuss the benefits and complexities of data use within patient groups. Claim your FREE ticket now!
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[Image description: Photo of a doctor and woman in her 60s speaking about her health]
15 April, 2021 / Rare Disease World

Involved in the 100,000 Genomes Project? This update is for you

Genomics England is ready to begin the process of looking for ‘Additional Findings’ for participants of the 100,000 Genomes Project who opted in. Check and change the choice you made when consenting about opting into ‘Additional Findings’ by Monday, 19th April now!
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14 April, 2021 / Findacure News

April showers bring…a new RareChat!

You spoke and we've listened! This month's Rarechat is on rare disease and employment! Join us on Wednesday 28th April to discus what it's like to have a rare condition in the workplace. Register now!
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[image description: photo of a young girl smiling holding a sign that says why she supports drug repurposing]
31 March, 2021 / Findacure News

Drug Repurposing for Rare Diseases Conference 2021 returns!

Our Drug Repurposing for Rare Diseases Conference 2021 is coming back on 15th - 16th June! Our conference will be run entirely online via the Swapcard platform. Registration is NOW OPEN, so hurry over to our website to be amongst the first to sign up and claim your ticket!
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[image description: infographic for Findacure's Ensuring inclusive communications around genetics webinar that shows three logos at the top and a computer on the right hand side]
17 March, 2021 / Findacure News

April’s webinar has been announced!

We're teaming up with Breaking Down Barriers to deliver an informative webinar on understanding genetics in the rare disease field on 21st of April at 11:00am GMT! See what will be discussed and claim your free ticket now.
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[image description: Infographic of the four 2020 Student Voice Prize winners' headshots in a circle surrounded by medical stickers and the SVP logo]
4 March, 2021 / Findacure News, Rare Disease World

The 2020 Student Voice Prize winning essays have been published!

The 2020 Student Voice Prize winning essays have been published! Read Catriona Chaplin's overall winning essay in the Orphanet Journal of Rare Diseases or view Caitlyn, Molly and Sanjana's runner-up essays on BioMed Central's blog. Congratulations again to The 2020 Student Voice Prize winners!
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Image description: infographic of a zoom room full of people smiling for an article on the importance of patient groups
2 March, 2021 / Findacure News, Rare Disease World

We’re featured in Health Awareness and Mediaplanet’s 2021 Rare Diseases campaign!

We're featured in Health Awareness and Mediaplanet's 2021 Rare Diseases campaign! Read our CEO's article, Rare disease patient groups provide hope to isolated communities, in full now and be sure to pick up a copy of the Guardian newspaper to read the entire campaign in print.
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[image description: photo of two women sitting next to each other engaged in conversation at a table]
24 February, 2021 / Findacure News

Register to attend our online mental health and wellbeing workshop

Findacure is pleased to announce its next online workshop, which will provide guidance and practical advice to patient groups seeking to better support the mental health of their respective rare communities. Register now to join us on 23rd - 25th March!
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