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 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 Libbie, our Projects and Communications Manager, on [email protected].
Should 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...
read moreFindacure’s fundraising reaches new heights
[row][two-third] A cold and muddy field, away from any signs of civilisation, may seem like a strange place to congregate at 7am on a Saturday morning. But excitement was quite literally in the air as six courageous individuals prepared themselves to jump out of a...
read moreMedicine beyond the textbook: Although I did not choose to be, I have become an expert patient
[row][two-third] This is the first 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. “You’re young. It’s just a cold. You...
read moreLet's Talk Tyrosinaemia
To mark last week's National Metabolic Disease Awareness Week, Swedish Orphan Biovitrum (Sobi) has launched a new website called "Let’s Talk Tyrosinaemia". The website is designed to enhance the portfolio of support materials available for parents and carers of...
read moreResearch is hope: summary of Findacure’s 11th workshop
The ultimate aim of rare disease patient groups and charities is to find a cure for their conditions. Research holds the key for the future of millions of patients and their families; it is hope for the future. And patient groups and charities play a critical role in...
read moreMeet Mary Rose, Our New Events Officer
[row][two-third] We have a new member of staff, Mary Rose Roberts, who joined the Findacure team last week as our new Events Officer. In this post, we would like to introduce you to her. What were you doing before you joined Findacure? Before joining Findacure, I was...
read moreOne rare condition – many common issues
[row] What are the multiple challenges of having an invisible condition, and how can greater awareness help? To mark the beginning of MdDS awareness month, our friend Polly Moyer has some useful insights to share. June is the awareness raising month for the rare...
read moreCollaborating for Cures
Rare diseases are leading the charge in research when it comes to collaboration. The unique selling point of this group of conditions is the willingness of all stakeholders to work together to achieve better health outcomes for patients. This is something we champion...
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