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].

My 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 more

Treasuring 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 more

Film-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 more

Let'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 more

Collaborating 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...

read more