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 Blayne, our Marketing and Engagement Manager: [email protected]
Findacure takes on the Superhero Run!
[row][two-third] On Sunday, 17th May, Findacure enlisted 11 superheroes to don their capes and run through Regents’ Park to raise money to support our work with fundamental disease patient groups, as part of the ‘DoItForCharity’ Superhero Run. It was a fantastic...
read moreMeet our new Scientific Officer
This week’s blog post is an interview with Richard Thompson, our new Scientific Officer. He will be developing our new drug repositioning programme, and so here’s your chance to find out a little about him: [row][two-third] What were you doing before you joined...
read moreTreasure The Exceptions pt. 5
This is our fifth 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 moreMeeting Team Findacure: Katherine Thorogood
[row][one-third][/one-third][two-third] Over the next few months, we want to introduce you to Team Findacure, the brilliant men and women who are taking on challenges and adventures to raise the money which supports our work. Today we're meeting Katherine Thorogood,...
read moreCross Your Own Oceans – Day 2
[row][one-third][/one-third][two-third] Following the successful launch of our BBC Children in Need funded ‘Cross Your Own Oceans’ project in March [click here to read the launch blog], the team met up on April 17th for our adventure day. Unfortunately, due to...
read moreCommunications and PR for Small Patient Groups
[row][two-third] This past Friday saw our sixth training workshop take place, on the topic of communications and PR for small patient groups. We had 40 delegates, from 29 patient groups, come together in the beautiful Grade II listed room at the Royal College of...
read moreFindacure Launches Online Portal for Patient Groups
UPDATE: WE RE-DEVELOPED OUR PORTAL IN 2016 AND IT IS NOW LOCATED AT WWW.PORTAL.FINDACURE.ORG.UK Findacure is thrilled to announce the launch of our Online Portal, a resource we hope will provide useful guidance and instruction for fundamental disease patient groups....
read moreTreasure The Exceptions pt. 4
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 moreCross Your Own Oceans – Day 1
[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 moreTreasure The Exceptions pt. 3
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 moreDrug Repositioning For Fundamental Diseases Conference
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 moreRare Disease Day 2015
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...
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