RARE Revolution Magazine

Welcome to the next instalment of our 12 Days of RARE countdown. This year there have been over 350,000 readers of RARE Revolution Magazine. We want to take this opportunity to thank everyone who has supported our work in turning the tide for #RareDisease this year. Which edition has been your favourite? You can catch up on all of our editions from this year at rarerevolutionmagazine.com

We're continuing our 12 Days of RARE countdown... Over this year we launched four editions of RARE Revolution Magazine—three core editions and one special edition. There's also more to come next year, and sooner than you think too. Discover all of our content at rarerevolutionmagazine.com

We're continuing our 12 Days of RARE countdown... Over this year we launched four editions of RARE Revolution Magazine—three core editions and one special edition. There's also more to come next year, and sooner than you think too. Discover all of our content at rarerevolutionmagazine.com

Special thanks to our wonderful contributors for providing their impactful perspectives on Warm autoimmune hemolytic anemia (wAIHA) and to Johnson & Johnson for sponsoring this Digital Spotlight. You can read all articles here: https://lnkd.in/e4rRbYdW #wAIHA #RareDisease #WarmAutoimmuneHemolyticAnemia #wAIHAWarriors wAIHA Warriors Johnson & Johnson

As 2024 comes to a close I would like to give sincere thanks to all our readers, followers and RARE Revolutionaries who engaged with our content this year. Whether you are a first-time or long-time reader, we hope you have felt connected, informed and seen. Thank you to all of you who have shared your stories and insights, please know that it is a real gift to the community. We are looking forward to sharing your voices in the year to come but in the meantime, Nicola and I would like to wish you all a very Merry Holidays, and we look forward to continuing to turn the tide together in 2025! - Rebecca Stewart, CEO, RARE Revolution Magazine.

What's happening in the world of rare disease this week? Take 5 before the weekend starts and dive in to our RARE Round-up. #RareDisease #RareDiseaseNews #IndustryInsights #PatientVoice #Advocacy

What role have international organizations played in advancing mitochondrial disease advocacy? How has the collaboration between patient advocacy groups and researchers impacted the field? Join our next RARE Rev-inar on January 26th 2025 for free here: https://lnkd.in/e4wyNJVA

With no approved treatment for warm autoimmune hemolytic anemia (wAIHA), the door remains open for therapeutic advancements to reduce disease burden for individuals, but that isn’t the whole picture. Two recent reports of the lived experiences of individuals living with warm autoimmune hemolytic anemia (wAIHA) have explored the substantial burden of disease and the mixed satisfaction with current treatment options. Read more here: https://lnkd.in/emxtWKgp #wAIHA #RareDisease #WarmAutoimmuneHemolyticAnemia #wAIHAWarriors wAIHA Warriors Johnson & Johnson

We're over halfway through our 12 Days of RARE countdown... This year, we hosted five RARE Rev-inars and five digital spotlights. Thank you to all of our sponsors. If you've missed any, you can catch up at https://lnkd.in/ezJ7EStC

Next up in our RARE Revolution 2024 Wrapped, it's Joe Rumney, our creative designer. WHAT HAS BEEN YOUR STANDOUT MOMENT THIS YEAR? "Settling into my new role as creative designer. I have always been passionate about finding a job where I can be creative, so getting the freedom this year to experiment with design and work on exciting new projects has been a real standout for me." WHICH ARTICLE IS YOUR FAVOURITE? "We publish so much content that it's extremely hard to narrow it down to just one article—as I'm sure everyone else has probably said already. For me though, it has to be 'Against All Odds' from the Women in RARE edition. Dr Stéphanie Cherqui has been a big name in the cystinosis community and I've been following her work with cell gene therapy for a while now, as I live with the condition myself. It was just really interesting to learn some backstory. I hope that research and trials will one day lead to the cure we've all been waiting for." WHO/WHAT HAS INSPIRED YOU THIS YEAR? "I'd have to say my RARE Rev teammates. After a really difficult start to my year, personally, it was great to return to my desk to people who genuinely wanted to listen. The support from everyone has always been great since I joined over two years ago, but particularly this year. And this reflects a lot from the rare disease community in general—we're all in this together to support each other." THREE WORDS TO DESCRIBE YOUR YEAR AT RARE REVOLUTION "Creative, reflective and newness." Read Joe's favourite article at https://lnkd.in/eXp5fBxp