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 Taryn, our Communications Officer: [email protected]
How to write an effective press release
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 moreDefying the odds, dancing the jive, and downhill adventures: Findacure’s fourth birthday.
[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 moreIntroduction to Patient Registries
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 morePatient engagement is not all it may SSIEM
[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 moreMedicine beyond the textbook: Receiving a rare diagnosis
[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 moreProving our social impact bond concept
[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 moreCo-ordinating a "Mission": Atacsia a Fi – Ataxia and Me
[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 moreShould the Olympic and Paralympic Games be combined?
[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 moreMy Mentoring Story: Pitt Hopkins UK
[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 morePatient Organisation Forum – July 2016
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 moreTreasuring our volunteers
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 moreFilm-a-cure
[row][two-third] As you may remember from our blog in March, we at Findacure have been partnering with rare disease patient organisations to support their crowdfunding efforts. Shortly after launching our joint crowdfunding campaign with the Children’s Hyperinsulinism...
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