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]
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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Meet Rare Youth Revolution’s Daisy Marriott!
This week's blog is an interview between Findacure and RARE Youth Revolution's Daisy Marriott! Daisy works for RARE Revolution Magazine as a Communications Assistant and is the Youth Editor of RARE Youth Revolution. Get to know more about Daisy and the RARE Youth...
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#RareMinds: Youth Mental Health Awareness Campaign
Youth Mental Health Awareness Day took place on the 7th September 2020, and in support, the Findacure team launched the #RareMinds: Youth Campaign. This campaign looked to highlight some unheard voices in our rare disease community with a focus on teens and young adults. These were their stories!
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How to live with a chronic illness in five easy steps
This blog was guest written for Findacure by Jessie Ace. Jessie was diagnosed with Multiple Sclerosis aged 22 and has been an active advocate for individuals with chronic illness since. She is a writer, public speaker, illustrator and host of the chronic illness...
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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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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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