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!
Today we at Findacure are celebrating a very special day: international Rare Disease Day! This awareness day brings public attention to the 6,000-8,000 identified rare diseases and those who are affected. Rare Disease Day has been going from strength to strength over...read more
This is our second Valentine's Day themed instalment from our guest blogger, who writes about different aspects to living with rare conditions. All posts under the title ‘Treasure the Exceptions’ are written by our guest blogger, with information kindly supplied by...read more
Last week saw Findacure hold its first training workshop of the year, on the topic of identifying rare disease patients. The workshop took place at the lovely White & Case LLP offices, with 36 patient groups, researchers, and pharmaceutical representatives...read more
We would like to introduce a new guest segment to our blog: ‘Treasure the Exceptions’, which will discuss different aspects to living with rare conditions. All posts under this title will be written by our guest blogger, with information kindly supplied by members of...read more
Findacure has teamed up with the US-based Cures Within Reach to help develop the concept of social investment for rediscovery research for fundamental diseases. Dr Bruce Bloom of Cures Within Reach explains how this works: Rediscovery research improves lives by taking...read more
[row][three-fourth] January saw our first patient group workshop, on the subject of ‘Fundraising on a Budget.’ There were 42 patient advocates who came to London, with talks focused on identifying different funding sources that patient groups can apply to. Our...read more
This year, we launched an essay competition among medical students in the UK to raise awareness about the importance of fundamental diseases. Students had to pick one of four titles and write an essay of no more than 1,500 words to enter the competition for the chance...read more
This past week Flóra and Nick have been rubbing shoulders with nobility at the House of Lords and candle-lit dinners. Last Tuesday, Nick and I attended a reception held at the House of Lords, honouring the 2014 Sanofi Patient Group Bursary Scheme Winners. Over...read more
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 more
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 more
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 more
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 more