RARE Round-up - keeping you up-to-date 13th September 2024
RARE Revolution Magazine
Accessible publication for the Rare Disease Community
RARE Insights - Medical
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The “cutting-edge” approach of Goal Attainment Scaling has the power to give the patient a voice in decision-making and to deliver truly patient-centred clinical trials, says Chere Chapman, co-founder and CEO at Ardea Outcomes, a Canadian clinical research organisation (CRO). Read more here: https://rarerevolutionmagazine.com/goal-attainment-scaling-delivering-patient-centred-clinical-trials-using-personalised-outcome-measures
RARE Insights
September marks #BrainAneurysmAwarenessMonth, a crucial time to shine a light on a condition that affects so many lives, yet remains underrepresented in public health conversations. At Hereditary Brain Aneurysm Support, this month holds special significance as they reflect on their journey and celebrate their second anniversary. Read more here .
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Sickle cell disease: The urgent need for better care, increased research funding and better treatment options. James Griffin shares his experience here .
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George Simpson, CMT Advocate writes our most recent letter to the editor regarding the state of funding for rare disease research. 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 .
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 .
RARE News
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The Student Voice Prize is back for 2024! Beacon for Rare Diseases and Medics 4 Rare Diseases host this international essay competition to raise the profile of #RareDiseases 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!? What’s the Patient Pairing Scheme?? - This is an opportunity for students to be paired with a rare disease patient or advocate to learn first-hand about their condition and patient experience. Students will arrange an interview of up to 1.5 hours with their patient pairing and use the insights gained during the conversation to inform and enhance their essays. Are you interested in sharing your experience?? Find out more here:?https://www.rarebeacon.org/student-voice-prizes/svp24/
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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
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Do you care for a disabled or seriously ill child in Lanarkshire? Would you like to experience free individual sessions of Holistic Therapies aimed at reducing stress and promoting self-management? Complete the application form at forms.office.com/r/SZcw71yjAP , or to register your interest, please email [email protected]
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As part of Brain Aneurysm Awareness Month, Hereditary Brain Aneurysm Support have recorded a support webinar focused on "Finding hope on horizon - how to live with fear and health anxiety". ? They’ll be chatting to psychotherapist Kym Winter, Founder and Director of RareMinds (https://www.rareminds.org/ ), a non-profit, counselling and psychotherapy service in the UK for people impacted by rare disease. ? They’ll be talking about coping strategies as well as their newly launched Wellbeing Hub with resources and information to help people live as well as possible with their rare condition. ? Check it out on their “Hope on the Horizon” page https://www.hbasupport.org/hope
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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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