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:

How 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,...

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Patient 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...

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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...

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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,...

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