RARE Revolution Magazine

Did receiving your diagnosis open access to support services (eg, social services, financial benefits, access to community or national services)?

About 1/4 of #CerebralPalsy cases have a genetic cause, and we are at the top of the list! #CTNNB1 symptoms that general CP patients may not be screened for: exudative retinopathy, tethered spinal cord, and heart defects. Learn more at curectnnb1.org/ctnnb1-and-cer… @ctnnb1cc

Welcome back to another of our Charity Partner spotlights! This time, we're highlighting Annabelle's Challenge. Annabelle's Challenge is a charity dedicated to supporting those living with vascular Ehlers-Danlos Syndrome (vascular EDS). Find out more at annabelleschallenge.org

Calling all cyclists! Keep Me Breathing has some spaces spare for the London to Brighton Cycle Ride on 14th September! It’s only 55 miles & you’ll be peddling for a great cause! KMB is working hard to develop their new treatment for children with Congenital Central…

Beacon is seeking new Trustees! 📢 They're looking for at least two new Trustees to help shape Beacon’s future and enhance their support for individuals and families living with rare conditions. As they enter an exciting new chapter under the leadership of their new Chair,…

We're sharing our advice for navigating finance following a #Bereavement and ways that will help to make the whole process easier and less stressful. Check out our other RARE resources over on our website at rarerevolutionmagazine.com/downloads

Here's a behind-the-scenes look at our annual strategy week, where coffee was always on the agenda! We're always looking to hear stories from people who have lived experiences with #RareDiseases and conditions. Email [email protected]

🚼 Registration is now open for the 2025 Newborn Screening Bootcamp, a virtual event co-hosted by the EveryLife Foundation and Expecting Health On September 17, 2025, join advocates, experts, and federal agency partners to learn about the latest developments in newborn screening.…

Next week, we tackle rare disease advocacy's unsustainable demands. Join Tobias Hagedorn as he discusses solutions! Sneak peek here: rarerevolutionmagazine.com/rare-insider/t… #RareDisease #Advocacy #PatientAdvocacy #Nonprofit #Sustainability

It's World Sjögren’s Disease Awareness Day. Sjögren’s is a rare autoimmune condition that can cause dry eyes, a dry mouth, aching muscles and joints, and extreme tiredness. To read more about Sjögren’s, visit bit.ly/4nJ0xFE

Accurately estimating how many people are at risk of rare genetic conditions is challenging, as these conditions are often misdiagnosed or undiagnosed. The increasing scope and availability of large-scale genetic databases offers a new solution to determining accurate rare…

"Putting you in the heart of the rare community" – This week, hear from Mary Anne Meskis of the Dravet Syndrome Foundation on their mission, the impact of Dravet syndrome, and what they need most from industry partners. #DravetSyndrome #RareDisease rarerevolutionmagazine.com/rare-insider/p…

Join us for the 2nd MENA Congress on Neurogenetic Disorders, 17-18 Oct 2025 in Dubai! 🌍 Learn from 30+ experts! Details & registration: neurogenetics.ae

Thank you again, Rare Revolution Magazine, and for those following along this #TuesdayTakeover! We'd love to stay in touch - Please connect with us on social media! You can learn more and sign up for our newsletter here: curectnnb1.org #ctnnb1syndrome @ctnnb1cc

CTNNB1 Awareness Day is in THREE DAYS! On Thursday, the 25th, will you join us in raising awareness for this rare disease? curectnnb1.org/ctnnb1-awarene… #strongertogether #raredisease #ctnnb1awareness #ctnnb1syndrome #careaboutrare @ctnnb1cc

Our dragonflies are our #why! As we fight for them, we are constantly encouraged by their adaptability, fuelling our hope for a better future. Check out the faces and stories of our dragonflies at curectnnb1.org/community/meet… #ctnnb1syndrome @ctnnb1cc

Our community and research network are working tirelessly towards potential treatments for those affected by CTNNB1 Syndrome. With 6 approaches underway, we are extremely hopeful for the future! Learn more at curectnnb1.org/research/ @ctnnb1cc

The symptoms? Many. The culprit? #CTNNB1. Where are the rest of our patients? Genetic testing holds the key. Publications about CTNNB1 Syndrome here: curectnnb1.org/research/publi…. @ctnnb1cc

Stanford Medicine's MUSK AI predicts cancer outcomes more accurately than ever! This breakthrough could revolutionize personalized cancer care. #AIinMedicine #CancerResearch #PersonalisedMedicine rarerevolutionmagazine.com/rare-insider/p…

Thank you Rare Revolution Magazine for this #TuesdayTakeover! We are so excited to share information about @ctnnb1cc and CTNNB1 Syndrome with you today. We hope all of the RRM followers enjoy and join us for CTNNB1 Awareness day on the 25th! #ctnnb1syndrome #awareness