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]
The keen Findacure blog readers among you will have seen a blog late last year introducing Deborah, a member of our brand new Empowerment Advisory Committee. We are proud to have established this Committee late last year in an effort to bring more of the rare disease...read more
[row][two-third] ‘People beyond the patients’ is the fourth 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. I’m in...read more
Our student essay competition is a small but important part of the work we do here at Findacure. It encourages young people studying biological degrees, or training for a medical career, to think about rare diseases and the challenges they create for patients and...read more
This week's blog begins our new 'Meet the team' blog series. One of the most vital parts of charity life is having fundraisers, and we want to take the time to fully thank and appreciate our amazing Findacure fundraising team for all the hard work they do for our...read more
[row][two-third] As 2017 fast approaches, we at Findacure have been reflecting on how 2016 has been yet another fantastic year for us and our projects. We’ve hand-picked our greatest moments and achievements, and have put together the following timeline. It sure has...read more
We are pleased to announce the establishment of our first Empowerment Advisory Committee, made up of rare disease patients, carers, and advocates. In this week’s blog, we would like to introduce one of our committee members and her rare story. [row][three-fourth] Hi,...read more
While 80% of rare diseases are genetic in origin, the remaining 20% are related to the environment or infection. This week's blog, written by Tonya Nelson and her colleagues at Mesothelioma and Asbestos Awareness Center, introduces us to one such rare disease and the...read more
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 more
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 more
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 more
[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 more
[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 more