Blog
We produce a weekly blog to share what we’ve been up to, stories from the rare disease world, interesting info on our projects, and more.
Every week we put our fingertips to keyboards to bring you, our community, stories of what we’ve been up to, things we’ve found interesting, and updates from our projects. Released every Friday, our blog is also regularly written by guests who openly share their experiences. We hope you enjoy reading our little instalments!
If you would like to share your own story on our blog, please contact Mary Rose, our Head of Operations: maryrose@findacure.org.uk
Meet our new Fundraising & Communications Officer
This week’s blog post is an interview with Louisa Ackermann, our new Fundraising & Communications Officer. Most of you will speak to her soon on our social media, and so here’s your chance to find out a little about her. [row][three-fourth] What were you doing...
read moreHappy 2nd Birthday Findacure!
Today marks the second anniversary of Findacure’s registration with the Charity Commission of England and Wales. To celebrate the occasion, we have decided to launch a Findacure blog in which we will share team updates, feedback from conferences we have attended. We...
read moreFourth Findacure Patient Group Workshop – 12th September
This past Friday saw 37 representatives from patient groups and research teams come together at the Royal College of Nursing for Findacure’s fourth workshop of 2014, to discuss how to manage a small rare disease patient group. Flóra Raffai, Project Manager at...
read moreThird Findacure Patient Group Workshop – 24th July
Yesterday saw 32 representatives from patient groups and research teams assemble at White & Case LLP in London for Findacure’s third patient group workshop of the year. The focus of the day was on the role patient groups could play in the development of clinical...
read moreSecond Findacure Patient Group Workshop – 16th May
This past Friday saw Findacure’s second patient group workshop take place at White & Case LLP in London, with 65 people attending, representing 53 different patient groups and organisations. The focus of the workshop was on the role of patient groups in applying...
read moreFirst Findacure Patient Group Workshop – 24th January
This past Friday saw Findacure’s first patient group workshop take place at White & Case LLP in London, with over 40 people attending, representing 35 different patient groups and organisations. The focus of the event was on different funding sources that patient...
read moreQ&A with Dr Anthony Hall, co-founder of Findacure, about Fundamental Diseases
Featured in this month's Industry Insight, Dr Anthony Hall speaks to IPT about the importance of R&D into rare conditions, the lack of commercial and scientific interest historically encountered in this area, and the reasons why this situation is now changing....
read moreThe Guardian covers Findacure: the Fundamental Diseases Partnership
Read it here: Social enterprise Findacure aims to unlock new insights into rare diseases
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