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]
12 Donations of Christmas
As the mornings get frostier and the nights set in even earlier, it’s clear we’re approaching a very special time of year: Christmas! But Christmas can also be a very tough time for people who live with a rare disease. Only 400 of the 7,000 known rare diseases have a...
read moreCan’t see the wood for the trees
This week’s blog comes from Gawain Paling, a founding member of Mast Cell Action, a charity set up to advance the cause of sufferers of Mast Cell Activation Disorders. In this post he shares his story to diagnosis. In the medical literature it is estimated that...
read moreCRISPR/Cas9: The hero we deserve?
For many years, we have been promised that medical innovation will one day allow us to edit the human genetic code, to remove harmful mutations in our DNA, and wipe out genetic diseases. At last, CRISPR/Cas9 has been hailed as the hero that will finally allow us to do...
read moreMedicine beyond the textbook: Pharmacology
[row][two-third] ‘Pharmacology’ is the third part of 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. Pharmacology is a...
read moreA patient centric road trip
[row][two-third] Rare disease patient groups play a huge role in building a community of people affected by a disease, and helping to share information about research, fundraising, services, clinical care, and symptom management. One of the best ways to help these...
read moreThe Midlands Rare Disease Showcase
[row][two-third] This week, our Head of Research Rick, talks about Findacure and Birmingham Children's Hospital's collaborative event, The Midlands Rare Disease Showcase. This week Findacure did something unusual, and slightly daring – no, not departing the South...
read more"The Findacure Essay Competition adds a third, crucial, dimension – student voices"
We are nearly halfway through the submission period for our essay competition! In this week's blog, Polly Moyer shares why she believes encouraging medical students to think, investigate and discuss rare is important. In 2014 I was invited to take part in a ‘patient...
read moreThe Royal Parks Foundation Half Marathon
[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 moreHow 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 more