RARE Revolution Magazine

We are delighted to launch our Autumn 2024 issue of RARE Revolution Magazine. Sponsored by UCB this edition, RARE mitochondria, 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 the full issue here: https://lnkd.in/eUEYnPTB RareDisease #MitochondrialDisorders

Caitriona Plunkett is a PhD researcher at the School of Psychology of Manchester Metropolitan University. Having been on her own journey with breast cancer she wanted to raise awareness, particularly among young women with NF1. Her research showed many women found it challenging to find reliable information and to be taken seriously by medical professionals. She would like to see women with NF1 feel empowered and take centre stage in their healthcare. https://lnkd.in/eh7rgSDR #NF1 #Neurofibromatosis #BreastCancer #BreastCancerAwarenessMonth #BreastCancerAwareness #CTT #ChildhoodTumourTrust

MitoAction are empowering the mitochondrial disease community through collaboration and innovation including digital tools. Read here: https://bit.ly/Mito-Action #Mitochondria #MitochondrialDisorders #RareDisease

Brothers Ned and Billy live with their younger brother Arthur who was diagnosed with mitochondrial disease in infancy. Arthur's condition has influenced Ned to pursue a career in science, soon to take a place at Oxford University studying biomedical science. It motivated Billy to raise awareness for mitochondrial disorders and the Lily Foundation, a charity where the family have found friendship and a community to belong to. Ned and Billy’s advice to other rare siblings is to be proud, seek support from others in similar situations, and focus on the joy of the present moment. Read here: https://lnkd.in/e2EhsJTe #Mitochondria #MitochondrialDisorders #RareDisease

Maria Hopfgarten discusses the vital role anticipatory guidance plays in raising a child and how it is so often lacking for those with medically complex needs. As a parent champion at Courageous Parents Network (CPN) she is a fierce supporter of their newest resource NeuroJourney, something she says would have proved invaluable when caring for her son Jacob. Read here: https://lnkd.in/eewcSw2c #Mitochondria #MitochondrialDisorders #RareDisease

Gidon Schwartz is outreach and education executive of the charity Jnetics He as BSC from Queen Mary University in Medical Genetics. Following graduation, he was national director of a Jewish Youth Movement. He is responsible for Jnetics education and outreach, raising awareness of JGDs and their work in schools, universities, and the wider Jewish community. Read here: https://lnkd.in/eG-gUE3x #Mitochondria #MitochondrialDisorders #RareDisease

Prof Gareth Evans was part of a team to first demonstrate an increased risk of breast cancer in women with NF1. He discusses these increased risks and the importance of early detection. While the NHS recommendation is for women with NF1 to get earlier breast screening at 40, Dr Evans highlights the need for women to be breast-aware at all ages to feel empowered about their health. https://lnkd.in/e6nFxSZM #NF1 #Neurofibromatosis #BreastCancer #BreastCancerAwarenessMonth #BreastCancerAwareness #BreastScreening #CTT #ChildhoodTumourTrust Childhood Tumour Trust

How much do you know about NF1 and the increased risk of breast cancer? Do you check your breasts regularly? Do you know what to look for and what is normal for you? Take our quiz and find out just how informed you are. https://lnkd.in/eSDM7UVn #NF1 #Neurofibromatosis #BreastCancer #BreastCancerAwarenessMonth #BreastCancerAwareness #BreastScreening #CTT #ChildhoodTumourTrust Childhood Tumour Trust

COMING SOON to Industry Insights, John Lagus, founder of Bluestem Pharma Consulting, LLC discusses real-world data in early access programmes. It makes sense for rare diseases. Never miss the latest industry insights. Sign up for free here: https://lnkd.in/eDadG9SZ

Before you round-up your week, settle in to our RARE Round-up. This week we feature our newest edition: RARE Mitochondria as well as Naomi's story living with sickle cell anaemia, opportunities to take part in our #RareDiseaseDay 2025 celebrations as well as the latest news and events. #RareNews #RareDisease #Mitochondria #News #Magazine #RDD2025 #RDD