Coming soon, 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, it is an issue full of hope as the mighty mito community are reimagining their futures, one collaborative step at a time. Never miss an issue, sign up for free here: https://lnkd.in/eDadG9SZ
RARE Revolution Magazine
Media Production
Alford, Aberdeensire 15,137 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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We're back this week to highlight another of our amazing Charity Partners. This time, it's Gene People. Supporting individuals and families affected throughout their diagnosis journey of a genetic condition. Join the mission to enrich the lives of those affected by a #GeneticCondition today by signing up to hear about fundraising appeals. Find out more at genepeople.org.uk If you'd like to find out more about becoming a Charity Partner, email hello@rarerevolutionmagazine.com.
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Before you round-up your week, settle in to our RARE Round-up. This week we feature our PFIC Digital Spotlight sponsored by Ipsen as well as insights from Mendelian, Lea Jabre, Courageous Parents Network and information on the Student Voice Prize by Medics 4 Rare Diseases and Beacon for Rare Diseases. Read these and many more inside. #RareDisease #RARENews #News #RareDiseaseNews
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Dr Patrick McKiernan describes the rare liver disease progressive familial intrahepatic cholestasis (PFIC) and shares his personal views on the challenges of diagnosis, treatment and care. Read more here: https://lnkd.in/ePK32efH #PFIC #RareDisease #PFICawareness #StopTheItch X
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Research to help establish a novel diagnostic test for #ProgressiveSupranuclearPalsy (PSP) has been celebrated at the 2024 International Congress of Parkinson’s Disease and Movement Disorders. As the only UK charity dedicated to creating a better future for everyone affected by PSP & CBD, PSPA has invested more than £150,000 in five projects that began in 2024. Read more at https://bit.ly/3U2Eg8z
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After her five-month-old daughter’s diagnosis with progressive familial intrahepatic cholestasis (PFIC) in 2012, Emily Ventura needed to wait three years to connect with others in the PFIC community. Today, the PFIC Network strives to ensure that no family experiences the disease in isolation. Read Emily’s story here: https://lnkd.in/e-q3Frnb #PFIC #RareDisease #PFICawareness #StopTheItch
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Dravet Syndrome UK awarded major funding boost to accelerate research into #DravetSyndrome. Read at https://bit.ly/4eWIFSt
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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 10.1 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: https://lnkd.in/e55JJPSG #PFIC #RareDisease #PFICawareness #StopTheItch
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Today, we're recognising #WorldSightDay, a global event to bring attention to blindness and vision impairment. Looking back at our RARE #Ophthalmology edition, sponsored by Horizon Therapeutics, we took a deep dive into the lives of individuals and families living with rare eye disorders, including Dave Steele, also known as The Blind Poet. Read this edition for free at https://lnkd.in/eeNWADxQ
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"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 #StiffPersonSyndrome. Read here: https://lnkd.in/eNytVK-C