RARE Round-up - keeping you up-to-date
RARE Revolution Magazine
Accessible publication for the Rare Disease Community
Summer edition 2024
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://bit.ly/RARE-Summer-Issue2024
The topic of our summer issue was to be RARE and Under-served, which should have been a deep dive into the unique challenges of often overlooked and grossly underserved populations within the rare disease community. Those for whom living with rare presents even greater challenges due to geographical, socio-economic, cultural and societal pressures or biases. Of course, the irony of this is not lost on us. Despite seeing the topic of under-served communities as the headliner theme for countless global conferences and speaker sessions and adorning lavish conference set ups over the last 12 months, we failed to attract a single sponsor on this topic. Underserved and underfunded!
Read our letter from the editor here: https://bit.ly/Summer2024-EditorsWelcome
The new EU Joint Clinical Assessment (JCA) will become an additional barrier for patient access to transformative advanced therapies if the HTA Coordination Group does not modernize its approach to evaluating these medicines, warned 32 not-for-profit organisations, including patient groups, scientific societies, research foundations and medical institutes, in a Call to Action announced today. Read more here.
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Navigating a bereavement is one of the hardest things anyone will have to face in life, especially when connected to a rare disease—but you're not alone.
Together with our RARE Revolutionaries, we compiled some advice and insights for coping with RARE grief.
You can read and download these resources at rarerevolutionmagazine.com/downloads
Are you a family raising a disabled or seriously ill child? Make sure to check out the FREE online Discover Digital summer festival organised by the brilliant Family Fund.
The festival is a fun space where children can learn new skills and socialise together during the summer holidays.
Join in and learn how to make a vlog, remix your favourite song and even create your own badge!
Registration is open NOW. Find out more on Family Fund's website
Your new conversation starter is here! Stand out from the crowd with our NEW range of lined notebooks, featuring the mascot of rare diseases, the zebra! Whether a companion for your next rare disease conference or even just somewhere to spill your personal jottings—we have a notebook for everyone! Get yours today by visiting the RARE Revolution Magazine Shop at rarerevolutionmagazine.com/shop
Please contact us to discuss bulk orders for conferences and working sessions: hello@rarerevolutionmagazine.com
At RARE Revolution Magazine we have always striven to do media differently. This means no paywall or paid subscription placing a barrier between you and our current content or our extensive back issues library. It means that ALL our earned media goes to individuals, charities and not-for-profits in the rare disease space. And it means that we ourselves are a not-for-profit organisation, so we can belong to the community we serve.
But we are often asked by our audience how the community can support our work. So, for those who feel able, you can now support the work of RARE Revolution Magazine and RARE Youth Revolution via our patron sign-up, and for as little as the cost of one cup of tea a month! And because we are mission-driven first and foremost, 10% of any profits from the patron sign-up will be donated to a community-nominated rare disease charity every 12 months.
The link below will take you to PayPal to set up a recurring debit/credit card charge of £3.00 (or local currency equivalent), which will continue until such time as you choose to cancel (through your PayPal account).
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Our mailing address is: Suite 2006, RARE Revolution Magazine, Letraset Building – Kent Space, Wooton Road,Ashford,Kent,TN23 6LN