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@example.com
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 more
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 more
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 busy finishing my...read more
[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 more
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...read more
A crucial part of our social impact bond (SIB) project is developing an understanding of the costs of rare diseases. Because the SIB is based on saving money for the NHS, our cost of illness modelling estimates the current financial cost of specific rare diseases in...read more
Volunteering for a small charity like Findacure can make a big difference to our overall productivity. We are currently searching for volunteers to help us with a range of activities, including marketing, design, communications, fundraising, project organisation,...read more
[row][two-third] Facebook is social media’s world leader. With 1.65 billion users, the platform offers the potential to reach an enormous and varied audience. You only have to look at No Make Up Selfie or ALS Ice Bucket Challenge, which raised $2.8 million and...read more
In the rare disease field, patient groups play a crucial role in supporting patients and motivating research into their overlooked conditions. However, research from Global Genes found that half of the thousands of rare diseases do not even have a disease-specific...read more
[row][two-third] We at Findacure spend a lot of time advising patient organisations how they can better their patient outreach and support. It isn’t often though, that we get to attend a workshop targeted at patients with a specific rare disease. To better understand...read more
At Findacure, we love to speak to patients, and spend a lot of time thinking about the unique needs and challenges of being diagnosed with a rare disease. Despite this, we rarely get to be part of a patient’s interactions with the NHS. Earlier this month I got this...read more
Compare and contrast the medical experience of a patient with a rare disease and one with a common condition
This week's blog features another of our fantastic essay competition submissions. Jessica Grace uses her personal involvement as both a doctor and patient to compare the medical experiences associated with common and rare conditions. Patients with rare diseases face...read more