RARE Revolution Magazine

As a voice for the community, we always strive to hold a mirror up to the experiences of that community. Our summer issue reflects the ripples of uncertainty being felt across the ecosystem. #Inequitable #Inaccessible #Deprioritised #Marginalised #Isolated #Forgotten? Under-funded Under-represented Under-supported Under-served. Hard to reach but must be heard. Read more here: https://lnkd.in/euuRtZMp #UnderservedCommunities #RareDisease

CureDuchenne a global leader in research, patient care and innovation for improving and extending the lives of those with Duchenne muscular dystrophy, proudly recognizes World Duchenne Day, celebrated on September 7, by launching new global initiatives and amplifying awareness of the disease. Read more here: https://lnkd.in/eyXCFbhJ #DuchenneMuscularDystrophy #WorldDuchenneDay #DMD #WDD2024

From BBC News: Our daughters’ DNA is helping other families. “I take a lot of comfort from the fact that our daughters’ stories and their short lives are now helping other families.” Laura O’Hare’s daughters both died soon after being born with a rare genetic disorder. Initially, she and her husband Michael were left bereft with lingering questions about what had happened. But their answers would eventually come from an innovative project that has been mapping rare disease #DNA across the UK. For more than 10 years the 100,000 Genomes Project has been tracing and comparing the genomes of tens of thousands of patients with rare diseases and their relatives." Read the full story at https://bit.ly/4cLGYG6

Take 5 minutes, grab a brew and settle in to this weeks RARE Round-up including the August RARE Recap, news, events and powerful articles. #RareNews #RareRevolution #RareDisease #RareDiseaseNews

This week, we're highlighting another of our Charity Partners. This time, it's Lymphangiomatosis and Gorham Disease Alliance (LGDA). LGDA ensures patients with complex lymphatic anomalies (CLAs) have the comprehensive support they need from peer, medical, and scientific communities to lead longer, higher-quality lives. Find out more about LGDA at lgdalliance.org

Put pen to paper with our exclusive notebooks. Help us to elevate the voices of the #RareDisease community—one story at a time. Which variant will you choose? Get yours now at https://lnkd.in/edXuHivg

Join the Cure Mito Foundation on 17 September 2024 for the Empower and Inspire: 3rd Annual Leigh Syndrome Symposium. Meet our symposium speaker, Dr. Shilpa iYer. The talk will focus on the generation and characterisation of patient-specific stem cells exhibiting mitochondrial abnormalities. Don't miss out on this incredible opportunity to connect, learn and make a difference. There's still time to join us—register at https://lnkd.in/exW4vp7M

HURRY! It's your last chance to register for live attendance for Caring for Rare 2024 from 12 to 14 September in Belgrade. This event aims to bring together representatives from various stakeholder groups throughout Central and Eastern Europe, all committed to improving the lives of those affected by #RareDiseases. Visit https://bit.ly/3WJaW7E to register. Applications for ONLINE attendance are open until Tuesday 10 September. NORBS - National Organisation for Rare Diseases of Serbia

This #ThrowbackThursday, for our final RARE Entrepreneur reshare, we're shining a spotlight on Hans Jørgen Wiberg from Be My Eyes. Be My Eyes was created by Hans Jørgen Wiberg in Denmark in 2015. Hans, who is visually impaired himself, saw an opportunity to create an app that could help blind people with everyday tasks. After the launch of Be My Eyes, the iOS app gained more than 10,000 users over just a 24-hour period. Read more at https://bit.ly/3rD87cL

Today is #InternationalDayOfCharity. So what better time to say 'Thank you' to our awesome group of Charity Partners? The tireless work of these small but mighty charities helps drastically improve the lives of those affected by rare diseases through research, fundraising, resources and support. You can see the full list of our Charity Partners at https://lnkd.in/d2iPxsau If you would like your charity or not-for-profit to join our Charity Partners, please email [email protected] for more information and to discuss further.