It's your last chance to nominate your star of the rare disease community, or to enter yourself, for the 2025 EURORDIS-Rare Diseases Europe Black Pearl Awards! Submit your nominations by tomorrow (30 August) at eurordis.org/black-pearl-aw…

In our latest Industry Insights Column, our own CEO, Rebecca Stewart asks: “What outcomes motivate companies to invest in disease awareness campaigns and content?” Read here: rarerevolutionmagazine.com/how-do-we-vers… #IndustryInsights

We're back to highlight another of our Charity Partners. This time, it's YWHAG Research Foundation. The YWHAG Research Foundation seeks to raise awareness and educate the public on the #YWHAG genetic mutation while supporting the families affected. Visit ywhagfoundation.org

Come along to the fifth regional conference Caring for Rare will be held on September 12-14, 2024, in Belgrade and online. Registration for in-person attendance is open until 6 Sept 2024, and online attendance is open until 10 Sept. Find out more at bit.ly/3WJaW7E

From The National Tribune: New funds to Embrace rare genetic disorder research. "Scientists have received nearly $140,000 from Archie’s Embrace to investigate an under-researched genetic disorder which causes neurodegeneration in babies." Read at bit.ly/3Xn1E2L

Join us at the Caring for Rare 2024 conference, held from September 12 to 14 in Belgrade and online. Registration closes for in-person attendance on 6 September, and online attendance is open until 10 September. Find out more info at bit.ly/3WJaW7E NORBS

Don’t miss the chance to participate in the Rare Barometer’s latest global survey, focusing on the impacts of living with a rare disease on everyday life! It is open until September 8th, 2024! @Eurordis #RareBarometer rarerevolutionmagazine.com/make-your-voic…

#QOTD: "Despite it all, I still love life, with my cane, my limited ability to walk and my pain. However, the life I imagined, most of my life, is just a simple dream today." Read Lea's article, 'If you're not dancing, something is wrong' at bit.ly/4dx1Jq9

"We're CureDuchenne and we're excited to takeover Rare Revolution's social channels this #takeovertuesday! CureDuchenne is a global leader in research, patient care and innovation for improving and extending the lives of those with #Duchennemusculardystrophy. Follow along today!

"Did you know that #Duchennemusculardystrophy is a progressive, muscle wasting disease that affects 300,000 children and young adults worldwide? But there's hope— we're getting closer to better treatments and, one day, a cure. CureDuchenne"

"Meet some of the families affected by #Duchenne and see how CureDuchenne is working toward a cure for everyone living with the disease. youtu.be/FG1BO1AA_wQ?si… youtu.be/FG1BO1AA_wQ?si… #takeovertuesday #Duchenne #RareDisease"

"At CureDuchenne, we support families living with Duchenne every step of the way. Visit cureduchenne.org for an event near you or find resources today! #takeovertuesday #Duchennemusculardystrophy #Raredisease"

This Friday, September 7, is #WorldDuchenneAwarenessDay. Show your support by posting on social media - download your toolkit at cureduchenne.org/general/world-…. CureDuchenne

"Thanks for joining us today and learning about CureDuchenne and #Duchennemusculardystrophy! Stay on top of the latest news and care recommendations by following us on social or by visiting cureduchenne.org. #takeovertuesday #Duchennemusculardystrophy #Raredisease"

In the world of rare diseases, narratives of struggle, resilience, and hope often remain untold. To bridge this gap, NPUK Head of Communications, John Lee Taggart, has written and directed a powerful new concept short film. Learn more here: rarerevolutionmagazine.com/uk-lsd-collabo…

Holly shares her diagnostic odyssey, started with a cancer misdiagnosis in 2020, before eventually being diagnosed with Gorham Stout Disease in March 2024. Read her powerful story here: rarerevolutionmagazine.com/find-the-power… #GorhamStoutDisease #GSD Misdiagnosis #RareDisease

We're often asked how the community can support our work. And in response, you can support our efforts via our patron sign-up...for the cost of one cup of tea a month! 10% of profits will be donated to a nominated rare disease charity every 12 months. 👉 bit.ly/RR-Patron-Sign…

#ICYMI Here James Chartres-Aris talks about relying on a network, perhaps more than typical couples when there is an element of #caregiving involved in our last RARE REV-inar. You can watch all the videos on YouTube here: bit.ly/RPV-RARE-REVin… #RareDisease Rare Patient Voice

It's the last chance to register for attendance for Caring for Rare 2024 from 12 - 14 September in Belgrade. This event brings representatives from stakeholder groups, committed to improving lives of those affected by #RareDiseases. bit.ly/3WJaW7E NORBS

Join the Cure Mito Foundation on 17 Sept 2024 for the Empower and Inspire Symposium. Dr. Shilpa iYer's will focus on the generation and characterisation of patient-specific stem cells exhibiting mitochondrial abnormalities. leighsyndrome.eventbrite.com