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 Blayne, our Marketing and Engagement Manager: [email protected]

My Lockdown Journey

Heather was diagnosed with Fibrous Dysplasia at 10 years old. She has had multiple operations throughout her life and manages her own chronic pain. She also has problems with her thyroid, fatigue and spine. Heather joined FDSSUK as a member around 10 years ago, hoping to learn more about the disease and meet other patients. Heather now volunteers for FDSSUK and is the secretary. She is very passionate about raising awareness of the disease, and enjoys being part of a community that allows her to interact with other patients and carers. This is her lockdown story!

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Thalidomide and Sodium Valproate: A Tale of Two Contexts

When it comes to the inherent nature of drugs, we believe that they aren’t inherently good or inherently evil; it’s the context that matters and defines their usage. See how the drugs, thalidomide and sodium valproate, have danced between being called Dr. Jekyll and Mr. Hyde, depending on the context of their usage, and discover the lessons learned from this tale of two contexts.

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4 more years, 4 more years!

This week, I celebrated my fourth year at Findacure. What a whirlwind it’s been! In that time, I’ve held three job titles, worked with seven different colleagues, planned well-over 30 events, and changed my hair colour more times than I can count. In this week’s blog, the team asked me to look back at my first presidential term four years and share some of my hopes for the next.

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Robyn’s journey: Inner resilience with PK deficiency

This week’s blog is guest written by Robyn Silverton, a holistic therapist and trained physiotherapist who also has the rare condition of PK deficiency, a haemolytic anaemia of which there are 1 in 200,000 patients worldwide. Robyn shares some of her story and what keeps her positive in the face of the challenges associated with having a rare disease.

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Setting yourself up for fundraising success

From the 4th to the 6th of May we ran a three day online workshop focusing on the theme of ‘setting yourself up for fundraising success,’ with the ultimate aim of providing expertise in how to transition patient group funding away from community fundraising to applying to grants and foundations and accessing corporate funding.

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