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]
Findacure is now on Thrift+!
Findacure is now on Thrift+! Donate your old clothes for FREE to help raise money for Findacure! Learn how to donate your clothes on Thrift+ and join the #FashionForGood movement.
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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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“Building your patient group data to drive research” webinar recap
If you happened to miss our joint webinar with Aparito and Pulse Infoframe back in July, we’ve made it easy to catch up on all the action! Hear from all three speakers from our “Building your patient group data to drive research” webinar to learn their key takeaways...
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“What does early access actually mean?” webinar recap
On 15th July 2020, Findacure was joined by Naomi Litchfield of Bionical Emas, Josie Godfrey of Metabolic Support UK and Liz Ryburn of Spinal Muscular Atrophy UK for a collaborative webinar that focused around Early Access Programmes (EAPs) and how patient groups could partake in them.
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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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Huntington’s Disease: Living Life in HD
This week’s blog is written by Ashley Clarke. Ashley takes us back to when her dad was first diagnosed with Huntington’s Disease (HD), and reflects on her journey from daughter and carer to HD activist and lifestyle blogger. See how she’s living life in HD!
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Getting heard above the noise: making effective use of social media
On 23rd June, we hosted a three-day social media workshop that sought to give patient groups the experience, confidence and skills needed to fully utilise the power of social media.
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Meet Blayne Baker, our new Marketing and Engagement Manager
We’re so excited to introduce our new Marketing and Engagement Manager, Blayne Baker, who joined the Findacure team this week! Find out more about Blayne here.
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Hope for rare repurposing in the future?
"A cheap and widely available drug can help save the lives of patients seriously ill with coronavirus." This was the lead headline on a BBC news story a few weeks back, which proclaimed Dexamethasone as the first proven life-saving drug for coronavirus. Put simply,...
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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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Community contact- RareChats and Zoom rooms
This week, we take a look at the Findacure RareChat sessions that have been running throughout lockdown that offer a chance for patient group representatives to have informal chats, network and share resources and experiences.
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