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 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]

Can’t see the wood for the trees

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...

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CRISPR/Cas9: The hero we deserve?

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...

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Medicine beyond the textbook: Pharmacology

[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...

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A patient centric road trip

[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...

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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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