RARE Round-up - keeping you up-to-date - 11th September 2024
RARE Revolution Magazine
Accessible publication for the Rare Disease Community
Coming Soon
Coming soon, our Autumn 2024 issue of RARE Revolution Magazine. Sponsored by 优时比 this edition dives into the fundamental role of mitochondria in our health as well as the scientific explosion in the land of mitochondrial research in this relatively new field. Most of all though, is an issue full of hope as the mighty mito community ?are reimagining their futures, one collaborative step at a time. Read our past issues here .
Digital Spotlight
Introducing this week’s Digital Spotlight to celebrate PFIC Awareness Day 2024. Sponsored by Ipsen , this week we will be sharing the experiences of patients, caregivers, advocacy organisations and HCPs with progressive familial intrahepatic cholestasis (PFIC). Read more here .
Learn more about The impact of progressive familial intrahepatic cholestasis (PFIC) in our condition overview and infographic article here .
Laura S?e Jakobsen was diagnosed with a rare condition that affects the liver called progressive familial intrahepatic cholestasis (PFIC) type 3 (PFIC3). People with PFIC3 generally develop signs and symptoms during late infancy or early childhood. In Laura’s case, she was not diagnosed until she was 14. Read her story here .
Francesca’s world was turned upside down when her daughter, Eva Luna, was diagnosed with a genetic liver disease months after birth. Without liver transplant only around 50% of children with PFIC survive to the age of 10.?Francesca feared the worst for her daughter’s future, and the toll this would take on her son, Ernesto. Now five, Eva Luna is thriving and loving life, and Francesca is the driving force behind a flourishing patient support group that is a lifeline for families around the globe. Read their story here .
RARE Insights
Learn how MendelScan from Mendelian an a rare disease case-finding platform, uses advanced technology to accelerate diagnosis and improve patient outcomes. Read here .
Family, friends and extended community, if available, are obviously potential sources of comfort and assistance. In the hospital or clinical setting however, demand is increasing for another, additional layer of support. This layer is called palliative care. Here Courageous Parents Network break down the steps of palliative care: https://rarerevolutionmagazine.com/understanding-palliative-care/
"What is pain? Today it is an invisible, unexplainable, symptom of my rare disease." Lea Jabre writes our latest Patient Voice article about her experience with stiff person syndrome. Read here .
Student Voice Prize
M4RD and Beacon are proud to announce the launch of the 11th annual Student Voice Prize,?proudly sponsored by Emotive! This is an international essay competition open to students of medicine, nursing, allied health disciplines and life sciences.
The winning essay will be published in the Orphanet Journal of Rare Diseases, receive a cash prize and the applicant will be invited to present at M4RD’s annual conference, with travel expenses included. Runners-up will receive cash prizes, along with the opportunity to feature their essays in a blog for Springer Nature.
Applicants have the option to be paired with an advocate, providing true insight into the lived experiences of those impacted by rare conditions.?Last year’s winner was Leisha Devisetti, a student from the University of California. She travelled from the United States to present her essay at M4RD’s annual conference in London. The Student Voice Prize is open for entries from the 2nd October to 13th November 2024. Essays must be 1,500 words or less. This year, questions will focus on the experiences of children and young people. Learn more here .
Events?
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.
RAREFest is back in 2024—an award-winning festival as unique as you are for curious minds of all ages. from Cambridge Rare Disease Network (CamRARE). Immerse yourself in a bustling marketplace of hands-on exhibits, interactive talks, films, and stunning research-inspired art. Discover the latest in innovative science, and cutting-edge technology and meet leading researchers, tech innovators, treatment pioneers, and individuals with rare conditions as they share their powerful stories. Join the event on Friday 22 and Saturday 23 November 2024 at the Guildhall, Cambridge UK. Secure your FREE tickets at camraredisease.org/rarefest24
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]
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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