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
RARE Revolution Magazine
Media Production
Alford, Aberdeensire 15,183 followers
Accessible publication for the Rare Disease Community
About us
RARE Revolution is an independent not-for-profit publishers dedicated to elevating the voice of the rare disease community through its magazine, online presence, disease awareness campaigns, patient engagement projects and social media. It produces high-quality articles and campaigns to support disease awareness and education across stakeholders, sectors and geographies. Featuring compelling voices and leading emerging conversations, RARE Revolution plays its part in turning the tide for rare disease. To find out more about joining the #RARERevolution visit rarerevolutionmagazine.com or contact the team at hello@rarerevolutionmagazine.com
- Website
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rarerevolutionmagazine.com
External link for RARE Revolution Magazine
- Industry
- Media Production
- Company size
- 2-10 employees
- Headquarters
- Alford, Aberdeensire
- Type
- Nonprofit
- Founded
- 2016
- Specialties
- Giving a voice to people living with RARE disorders, Providing informative content to help RARE communities, Working with industry to impart the latest in rare disease developments and technologies, Advertising, Marketing, Social Media Content Creation, Rare Disease, Patient Engagement, Project Management, Rare Disease Research , Health, Awareness Raising, Communication strategies, Blog, Journalism, Publishing, Editing, Report writing, Consultancy, and Magazine publishing
Locations
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Primary
Cushnie
Alford, Aberdeensire AB338LP, GB
Employees at RARE Revolution Magazine
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Nicola Redfern
Consult, coach, collaborate, connect - sharing insights & supporting multiple organisations in the gene therapy, oncology and rare disease world -…
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Nicola Miller
Editor In Chief at Rare Revolution Magazine, TEDx Speaker & Chair of Trustees for Teddington Trust (SCIO)
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Becky Pender
Community Engagement Senior Associate at Rare Revolution Magazine
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Joe Rumney
Creative Designer at RARE Revolution Magazine. Cystinosis advocate.
Updates
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Beautiful Aria (3) was diagnosed in 2021 with a rare, globally unique genetic mutation that has left her parents struggling to find appropriate medical care and treatment. Diagnosed at six months, they were delivered the bombshell that her mutation is life-limiting, and that there have been only two other children worldwide with a similar gene mutation that sadly didn’t live past two years old. With no established protocols or treatments, her parents, Andreea and Chris have been forced to take matters into their own hands and take on the impossible. Now they are assembling a team of world-leading researchers from around the globe with a single focus—find a cure for Aria’s n-of-1 mitochondrial condition. Read here: https://lnkd.in/eCnyiMfh #Mitochondria #MitochondrialDisorders #RareDisease
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It's an absolutely jam packed RARE Round-up this week. RARE Mito Digital spotlight - PFIC Press Releases A Day in the life Turning the tide for RARE Disease AND Our #RareDiseaseDay2025 takeover slots have been released. Dive in here. #RareDisease #RDD2025 #RareDiseaseDay #Takeover #RareMito #BreakingNews #RareRoundUp
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At just 23 years old, Sam Willder has faced an overwhelming series of health challenges, from a heart condition and diabetes to vision and hearing loss. Diagnosed with an ultra-rare mitochondrial disease with no name, he has navigated an abrupt journey to access the care and support needed. Now Sam is finding community and independence with the help of in-home carers, his guide dog Bryony and the support of local and regional charities. Read here: https://lnkd.in/e7KFn7aG #Mitochondria #MitochondrialDisorders #RareDisease
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The team at Columbia University Irving Medical Center are looking at the connection between our mitochondria health and our over all well-being including the impact of stress. Looking at Mitochondrial Stress, Brain Imaging, and Epigenetics (MiSBIE) their study is the first of it’s kind to harness principles of psychobiology to link mitochondrial diseases to mind-body processes. Read here: https://lnkd.in/eNgm4DKF #Mitochondria #MitochondrialDisorders #RareDisease
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Join Dr. Luis A. Quiñones from the University of Chile at our next RARE REV-inar as we discuss “A Blueprint to advance genomic medicine in Latin America” on November 7th 2024 at 4pm BST/11ma, CT. Sign up for free here: https://lnkd.in/exSP7Zda
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With the risk of developing breast cancer in women living with NF1, screening is critical. Download the letter to your GP at https://lnkd.in/e6nFxSZM #NF1 #BreastCancer (Childhood Tumour Trust)
With over 7000 rare diseases, GPs will not have encountered, or have a thorough understanding of them all. Women with NF1 very often experience a lack of knowledge about their condition from primary healthcare professionals and in particular about their increased risk of developing breast cancer and the NHS guidance to screen at 40. This is ten years earlier than population screening. To help inform GPs and other healthcare professionals of the risks and current guidance, download our letter to hand to your GP. https://lnkd.in/e6nFxSZM
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Supported by LifeArc and Cambridge Rare Disease Network (CamRARE) the ARTTRAnslations Project aims to bring together art and science to create impactful art that inspires conversations and awareness of rare diseases. This project saw the pairing of scientists and artists to develop impactful artwork representing topics relating to rare disease. We meet scientist Dr Gavin McStay and artist Charlotte Morrison who used the media of ceramics to bring to life the mitochondria—our cells powerhouse. Read here: https://lnkd.in/eU-sEsZj #Mitochondria #MitochondrialDisorders #RareDisease
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With hundreds of conditions coming under the umbrella of mitochondrial disease, with varying degrees of severity and impact, it can be challenging to not only diagnose but provide the best possible clinical care for this group of RARE patients. Dr Caterina Garone and Dr Amel Karaa discuss the pathology and approach to care, with a focus on mitochondrial myopathies. Read here: https://lnkd.in/ekuJP33W #Mitochondria #MitochondrialDisorders #RareDisease
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When Vicky Hewitt and Ruy Camacho learned about their son Alex’s life limiting condition, they were simply unwilling to accept the status quo. A diagnosis of thymidine kinase 2 deficiency (TK2d) initially left them in a state of paralysing shock, but with no time to lose and Alex’s rapidly deteriorating health, they were soon propelled into action. Read their story here: https://lnkd.in/eTgzwEEt #Mitochondria #MitochondrialDisorders #RareDisease