News
Keep up-to-date with our latest news, including event announcements, project updates and recruitment, on this page
20 July, 2021 / Rare Disease World
Give your feedback on the new Medicines Repurposing Programme
Give your feedback on the new Medicines Repurposing Programme by midday on 22nd July! Learn how to submit your feedback now!
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7 July, 2021 / Findacure News
July’s RareChat announced!
During our next RareChat on Wednesday 21st July we will explore the rare disease patient experience of transition from childhood to adult care in the health system.
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29 June, 2021 / Findacure News
New webinar announced: Understanding health economics
Join us, Costello Medical and Realise Advocacy on 28th July to learn the basics of health economics! Discover the role patient groups play in the health technology assessment (HTA) process and more. Register now!
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17 June, 2021 / Findacure News, Rare Disease World
Have your say on what the UK Rare Disease Framework Action Plan should include
Join us on 20th July from 10am – 12pm, as we sit down with NHS England and NHS Improvement for a two-hour discussion on the UK Rare Disease Framework Action Plan. Register now to have your say!
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10 June, 2021 / Findacure News
Get ready for our next online workshop!
The proof may be in the pudding, but we believe the proof is actually in the data! Our next online workshop will focus on data use, collection and storage. Learn more now and sign up!
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4 June, 2021 / Findacure News
June’s RareChat announced
Join us on Wednesday the 23rd June as we discuss Community fundraising through COVID-19 and beyond. Register to share how you see community fundraising continuing and evolving in the immediate and post COVID-19 era and more. Sign up now!
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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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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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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]](https://www.findacure.org.uk/wp-content/uploads/2021/04/AF-doctor-patient-600x343-1.jpg)
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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