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 14,978 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 [email protected]
- 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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Welcome back to our RARE Recap, where we look over the digital content we published over the last month. If you missed it, here is the content from August. LETTERS: - A troubling development in access to treatment for people living with #PrimaryBiliaryCholangitis (#PBC): https://bit.ly/4c64ehv A DAY IN THE LIFE: - #JosiahStrong: Living with #FamilialColdAutoinflammatorySyndrome—one year on: https://bit.ly/3Z1lrWw PATIENT VOICE: - Rare Cancers: #Sarcoma and your mental health: https://bit.ly/3SXeH8q - Looking for the positives during hard times: #VisualSnowSyndrome: https://bit.ly/3SEAgKQ - Finding Joy and Keeping Joy: Morven-May MacCallum’s 17-year battle with #LymeDisease: https://bit.ly/3MoHaQI TURNING THE TIDE FOR RARE DISEASE: - Rare Patient Voice: Helping patients and caregivers share their voices: https://bit.ly/4fZYoBD CHARITY AND ADVOCACY: - SMA Europe unites international voices in the new documentary ‘One Community. Shared Dreams’: https://bit.ly/4ejLSeL RARE NEWS: - CMT Research Foundation invests in project at nationwide children’s hospital to develop improved gene therapy delivery systems for several types of #CMT: https://bit.ly/3LOcOGX - Timothy Syndrome Alliance (TSA) looks to recruit Trustee: https://bit.ly/3LMxZt4 - Nod to Naz art exhibit opens in California: https://bit.ly/4ceYrqd - The Psp Association increases support to families: https://bit.ly/4cDtqwc - Introducing the Vascular Voice Network: https://bit.ly/4cKAd7e - Ladies Luncheon Newport Beach to debut at Shady Canyon Golf Club on October 15 benefiting CureDuchenne: https://bit.ly/475L1Mb - CureDuchenne expands global initiatives and spreads awareness for World Duchenne Day 2024: https://bit.ly/476XXkL - Exercise is medicine for people living with #PSP & #CBD: https://bit.ly/3Mpr4GM Do you enjoy seeing our content? Why not support us via our patron sign-up? Visit https://lnkd.in/evirGFhn. Visit rarerevolutionmagazine.com for more.
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#QOTD: "Despite it all, I still love life, with my cane, my limited ability to walk and my pain. However, the life I imagined, most of my life, is just a simple dream today." Coming to terms with a rare disease diagnosis, and realising the life you pictured for yourself may not be achievable, can be extremely hard to handle. While Lea Jabre feels mostly positive about her life, all feelings are valid. Surround yourself with friends, family and your healthcare team who can help you to understand your situation. Read Lea's article, 'If you're not dancing, something is wrong' at https://bit.ly/4dx1Jq9
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Don’t miss the chance to participate in the Rare Barometer’s latest global survey, focusing on the impacts of living with a rare disease on everyday life! It is open until September 8th, 2024! EURORDIS-Rare Diseases Europe #RareBarometer https://lnkd.in/ekSsT3Kh
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Join us at the Caring for Rare 2024 conference, held from September 12 to 14 in Belgrade and online. Registration closes for in-person attendance on 6 September, and online attendance is open until 10 September. Find out more information and register for your place at https://bit.ly/3WJaW7E NORBS - National Organisation for Rare Diseases of Serbia
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From The National Tribune: New funds to embrace rare genetic disorder research. "Scientists at La Trobe University have received nearly $140,000 from rare disease charity Archie's Embrace to investigate an under-researched genetic disorder which causes early-onset neurodegeneration in babies. The disorder, which causes a deficiency of the enzyme #ECHS1, leaves the body unable to digest and use certain amino acids and fatty acids – crucial nutrients which provide the body with the energy it needs to grow. Archie’s Embrace Director Ros Melling hopes the research will open doors to finding new ways of improving symptoms, decreasing suffering, and increasing lifespan for children who have ECHS1 deficiency. “Gaining the science and research and strengthening knowledge on how to improve quality of life for these children is powerful. Many parents are told at the time of diagnosis that there is little hope, as there is currently no treatment. Research and data are limited, and this is what is needed to change treatment at the patient face by medical teams,” Ms Melling said." Read the full article at https://bit.ly/3Xn1E2L
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The Sickle Cell Disease Association of America Inc., a national non-profit membership organization that advocates for people affected by sickle cell disease, will participate in National Sickle Cell Awareness Month in September. The association will hold events, engage with the sickle cell community and support the activities of its member organisations this month. https://lnkd.in/eP3mfB2V #SickleCell #SickleCellDisease #NationalSickleCellAwarenessMonth
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As SMA Europe’s 2024 Awareness Campaign draws to a close, SMA Europe is excited to launch ‘One Community. Shared Dreams’, an impactful documentary that highlights the journey and efforts of the SMA community while fighting for a better future of all those living with SMA. Read here: https://lnkd.in/eQfGnzpQ #SMA #SpinalMuscularAtrophy #OneCommunitySharedDreams #SMAEurope SMA Europe
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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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Roll up...Roll up... It's your RARE Round-up for this week. Featuring patient stories, though leadership and events. #RareDisease #RareDiseaseNews