RARE Round-up - Keeping you up to date 20th September 2024
RARE Revolution Magazine
Accessible publication for the Rare Disease Community
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Join us on September 21st for our next Digital Spotlight. Sponsored by Ipsen, this time we will be sharing the experiences of patients, caregivers, advocacy organisations and HCPs with progressive familial intrahepatic cholestasis (PFIC).
RARE Insights
?Haemochromatosis UK UK’s screening programmes for haemochromatosis, a genetic condition that causes iron to build to toxic levels in the blood, have helped thousands across the UK. By providing postal health check kits, the charity has helped thousands secure earlier diagnoses, preventing the lifelong and potentially fatal implications of the condition. Read more here.
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?In our latest Sunday Sessions, Em Cao talks about how reiki, spirituality and faith help them accept life with the rare disease Gorham-Stout Disease (GSD). Read here.
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?Drunk or disabled? Haider Farouq shares his journey to diagnosis and challenges with autosomal recessive cerebellar ataxia type 1 (ARCA-1). Read here. ?
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?Alex The Leukodystrophy Charity (Alex TLC) is a trusted organisation dedicated to supporting everyone affected by leukodystrophy. Learn more about their work here.
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?New to RARE Youth Revolution, Eden talks about her recovery from Long Covid and how the symptoms greatly impacted her experience at university. "I really struggled at university with the symptoms, and it also had a negative impact on my mental health." To read the blog, visit?https://bit.ly/3MG5QEx
Industry Insights
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In the first half of 2024, the National Institute for Health and Care Excellence (NICE) held three public board meetings in March, May, and July. These meetings highlighted several significant initiatives and changes, focusing on the organisation's commitment to enhancing healthcare guidance, improving performance, and engaging with the community. In our latest Industry Insights Column, Sheela Upadhyaya summarises the main activities and commitments that have been made for the coming year. Read here.
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RARE News
Beacon for Rare Diseases and Medics for Rare Disease host this international essay competition to raise the profile of rare diseases with medical and life sciences students who may have never come across them in their training.?The Patient Pairing Scheme is now open for patients until the 30 October! Are you interested in sharing your experience??Find out more here.
Events?
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Do you have an event, conference, webinar or awareness day coming up that you would like us to share with our RARE community??Please drop us an email to find out about the advertising packages we offer. If you are one of our charity partners then it's included in your member benefits. We offer a variety of media partnerships and tailored social media/newsletter advertising packages. With a monthly reach of over 5 million people we are always looking for relevant newsworthy content. Start a conversation with us today.?
?Email [email protected] for more information.?
Join Us for our Family Day at ICED25! ?? When: 10th - 12th June 2025 We’re excited to announce our special Family Day at the 9th International Conference for Ectodermal Dysplasia in Birmingham, in June 2025 (ICED25.) On this day, we will be offering a unique opportunity to delve deeper into the world of ED. Families can engage with our Medical Advisory Board (MAB) and invited specialists. Beyond the educational aspect, it's also a wonderful opportunity to connect and build meaningful friendships with others who share your journey. For more information, please check out - https://edsociety.co.uk/event/family-day-at-iced25/
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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 to activate your bulk discount: [email protected]
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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 links below will take you to GoCardless (UK only) or Paypal (International and UK) 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 GoCardless or Paypal account).
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