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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]

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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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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