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 Taryn, our Communications Officer: [email protected]
This is our fourth instalment from our guest blogger, who writes about various aspects of living with rare conditions. All posts under the title ‘Treasure the Exceptions’ are written by our guest blogger, pro bono. The information is supplied by members of various...read more
[row][one-third][/one-third][two-third] Late last year we were fortunate enough to receive a grant from the BBC Children in Need to develop a three-day empowerment project for a group of young people aged between 13 and 16. The project aims to bring together teenagers...read more
This is our third 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 members of various patient...read more
To celebrate Rare Disease Day 2015, we ran our annual scientific conference last week at the BMA House, on the topic of drug repositioning for fundamental diseases. The conference saw 53 delegates come together, representing patient groups, research teams,...read more
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