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]

Welp, we didn’t see 2020 coming: What an unprecedented year it’s been!

It’s been a long road, but 2020 is finally cancelled. Before we ride off into the sunset and 2021, join us as we reflect back on a year that no one saw coming; not even Nostradamus himself and that’s saying something!

Here is your whistle-stop tour of Findacure’s 2020 year in review. Highlights only!

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A look back at our online workshop ‘Successful collaborations: engaging the people that matter’

Back in September, we hosted a three-day online workshop that focused on how patient groups can successfully collaborate with stakeholders from across the rare disease spectrum. The goal of the workshop was to help patient groups collaborate with industry, pharma and other rare disease patient groups so that the rare community can advocate for change as one, united force. See what you missed!

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A parent’s diagnostic odyssey: Braving CRMO as a mother and nurse

This week’s blog is written by Dawn Baker, the mother of Joseph and Hannah Baker who you know from our #RareMinds: Youth Campaign on Facebook! Dawn has been brave enough to share her inner thoughts, worries and hopes as she continues to navigate Joseph’s diagnostic odyssey with CRMO beside him. You’ve heard how the rare disease CRMO affects her children, so now it’s time you heard how CRMO affects their mother, Dawn, as both a mom and a nurse living out of Texas.

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Born to serve: from Desert Storm to rare disease warrior

This week’s blog is written by Dan Shockley, a retired U.S Navy Veteran who served in Operation’s Desert Storm, Endurance and Iraqi Freedom. In 2012, at the age of 51, Dan received a diagnosis of a rare gene mutation, attenuated familial adenomatous polyposis (AFAP). This life-changing event spurred Dan on to become a rare disease expert and colon-cancer ambassador, sharing his experiences in an effort to encourage and inspire fellow rare disease patients.  

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