As a voice for the community, we always strive to hold a mirror up to the experiences of that community. Our summer issue reflects the ripples of uncertainty being felt across the ecosystem. #Inequitable #Inaccessible #Deprioritised #Marginalised #Isolated #Forgotten? Under-funded Under-represented Under-supported Under-served. Hard to reach but must be heard. Read more here: https://lnkd.in/euuRtZMp #UnderservedCommunities #RareDisease
RARE Revolution Magazine
Media Production
Alford, Aberdeensire 14,947 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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Be featured on an upcoming episode of the Once Upon a Gene podcast with Effie Parks. Effie will revisit an earlier episode called The Beginner’s Guide to Rare Disease. Send in your voice notes reflecting on your rare disease journey—think about what you wish you knew back then, the most valuable lessons you’ve learned, your best advice for new families, or even just a message of hope and encouragement. Send your voice notes to https://bit.ly/4fVmixZ
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Have you registered for the fifth regional conference Caring for Rare? It will be held on September 12-14, 2024, in Belgrade and online. Registration for in-person attendance is open until 6 September 2024, and online attendance is open until 10 September. Find out more and register at https://bit.ly/3WJaW7E
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From BBC News: Woman with paralysed stomach told she was anorexic. A woman lived with a paralysed stomach for three years and was told she might die after doctors wrongly diagnosed her with anorexia. Luned Davies, 23, has #Gastroparesis which affects the nerves in her stomach and means she cannot digest her food properly - which led to her dropping down to just five stone (31.7kg). Ms Davies, from Banwen, Neath, said she "knew" she did not have an eating disorder, but claims nobody took her concerns seriously after she first started experiencing her symptoms in 2020. Swansea Bay health board said it can sometimes take "a while" to diagnose rare conditions. Read the full story at https://bit.ly/3YSXFMq
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CureDuchenne a global leader in research, patient care and innovation for improving and extending the lives of those with Duchenne muscular dystrophy, proudly recognizes World Duchenne Day, celebrated on September 7, by launching new global initiatives and amplifying awareness of the disease. Read more here: https://lnkd.in/eyXCFbhJ #DuchenneMuscularDystrophy #WorldDuchenneDay #DMD #WDD2024
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Today we say farewell to our Digital Editor Geoff Case. Geoff originally joined us freelance as a copy editor and in 2022, joined the team at RARE Rev full-time to drive our digital publishing. During his time with us, Geoff has been instrumental in building upon our digital presence and has been a valuable and much-loved part of our small and mighty team. We will miss Geoff’s humour and wonderful editing notes and we thank him for joining us on our journey. We would like to wish Geoff all the very best as he heads off for an equally fulfilling career in special education teaching.
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This week, we're highlighting another of our Charity Partners. This time, it's Angelman UK. Angelman UK is a UK-based charity supporting families affected by Angelman Syndrome (AS), a rare neurogenetic disorder causing poor mobility, seizures, little or no speech and poor sleep. Its main aims are to support families coming to terms with diagnosis and dealing with the challenges of life with AS, while raising awareness with healthcare professionals and the general public. Read more at angelmanuk.org
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Come along to the fifth regional conference Caring for Rare will be held on September 12-14, 2024, in Belgrade and online. Registration for in-person attendance is open until 6 September 2024, and online attendance is open until 10 September. Find out more and register at https://bit.ly/3WJaW7E
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Have you listened to our episode of The Virtual Campfire, hosted by Tony Martignetti? Join our CEO Rebecca and editor-in-chief Nicola as they discuss their first experiences with the #RareDisease community and the road to founding RARE Revolution Magazine and Action for XP. You can catch up with the episode at https://bit.ly/46yXo2S
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