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: firstname.lastname@example.org
[row][two-third] This week, our Events Officer Mary Rose talks about her experience attending the 2016 Royal Parks Foundation Half Marathon. Sunday 9th October began as a beautiful, sunny (and cold!) day. As I made my way across London, I was struck by how peaceful...read more
Samiksha Pattanaik, journalist and Findacure's digital communications intern, shares her knowledge to help you and your patient group write great press releases. Whether you’re hosting a fundraising event, launching a new campaign, organising training workshops,...read more
[row][two-third] After much anticipation, the day finally arrived for Findacure’s first ever Gala Dinner! On Friday 23rd September, 60 people joined us at the Hilton Hotel in Cambridge to celebrate the fourth anniversary of our charity registration. Following welcome...read more
Rare diseases pose great challenges for research, primarily because each condition affects so few people. Patients are dispersed around countries, around the world, and very little is known about how the condition progresses and affects individual people. Patient...read more
[row][two-third] Last week, our Executive Director Flóra Raffai travelled to Rome, Italy for the SSIEM 2016 symposium. In this blog, she shares the main themes that arose from her panel on patient empowerment. I was invited to join a panel at the Society for the Study...read more
[row][two-third] 'Receiving a rare diagnosis' is the second part Jessica Grace's 'Medicine beyond the textbook' blog series. The blog posts, released every two months, share Jessica's stories and thoughts as both a medical student and rare disease patient. I remember...read more
[row] [one-third] [/one-third][two-third] As fans of all good crime dramas will know, proof is a hard thing to establish. Over the last year, the Findacure team has found itself in the position of having to build its own body of evidence – not to catch a criminal –...read more
[row][two-third] This week’s blog has been written by our guest Alan Thomas from the patient group Atacsia a Fi - Ataxia and Me. In this post, Alan shares his journey to setting up his own patient support group in Wales for the rare disease Ataxia. Ataxia - "What`s...read more
[row][two-third] Libbie, sports enthusiast and rare disease advocate, shares why she believes the Olympic and Paralympic Games should be combined into one large sporting event, bringing together athletes of all abilities. As the 2016 Olympic Games draw to a close in...read more
[row][two-third] This week's blog has been written by our guest Sue Routledge from the patient group Pitt Hopkins Syndrome UK. Sue was one of the first participants in our 2015-16 peer mentoring programme, and in this post she shares her mentoring story. I was...read more
In recent years, a lot of attention has been placed on the need to bring the pharmaceutical industry together with patient organisations, to ensure the patient voice is present in treatment development. As part of this trend, the Association of the British...read more
Volunteering for a small charity can make a big difference to their overall achievements. We are currently searching for volunteers to help us with a range of activities, including marketing, design, communications, fundraising, project organisation, on-the-day help,...read more