Beacon for Rare Diseases
@RareBeacon
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Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Cambridge, England
Joined March 2012
Photos OUT NOW! 📸. Want to reminisce about the #RareShowcase25 or weren't able to attend on the day?. View the fantastic lightning talks that happened on the night and check out our full photo gallery here - smile you're on camera! 😄.
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New course on the Resources Hub! . 💻 How to build relationships and network. This video guide will walk you through practical strategies to connect with confidence, build lasting relationships, and grow your community’s reach and impact. Watch here: 👇.
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Work w/ patients/families affected by TK2d?. @4Lilyfoundation + @weareMSUK want to hear from individuals/families affected by this ultra-rare #mitochondrialdisease to support a submission to @NICEComms about access to a potential #treatment. Take survey!.
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We love seeing Kinsley and mom Sarah! 😍. Sarah was on our Patient Group Mentoring Programme and has moved mountains with her mentor @AaronBlocker_ to further TUBB4A awareness. Keep smiling Kinsley ☺️ . We're all rooting for you!.
This is Kinsley, a 4-year-old with TUBB4A-related leukodystrophy. Her family flew in from Dallas to visit our lab yesterday and said she’s always talking about “the medicine in my back so I can walk and run. and then run some more.”. A powerful reminder: Hope matters. Always.
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RT @CharityEos: 💜Why does this #eosinophil look like a heart? 💜Prof. @RossanaMelo5, a cell biologist @UFJF_, explains what an electron micr….
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The #UK could lead the way in rare disease innovation, boost the country’s R&D ecosystem, and change the future for millions of people living with rare diseases. We support this @LifeArc1 and @GeneticAll_UK report on how we #ChangeTheRareFuture:
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RT @RDRUKHub: 📢 Are you involved in rare disease research in the UK? We want to hear from you!. 🔎 Share your experiences with regulatory an….
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RT @Ataxia_and_Me: @OHRareDisease Please share.1 in 17 people in the UK will be affected by a #RareDisease but the realities of living with….
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RT @lifearc1: On Monday, our new report with @GeneticAll_UK launched. Here, our Chair of Rare Disease, Amit Nathwani, talks about why it's….
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RT @GeneticAll_UK: Launching our new report 'Time to Decide - a follow-up to Fixing the Present, Building the Future'. Our report explores….
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The recent report published by @LifeArc1 and @GeneticAll_UK gives several recommendations on how we can #ChangeTheRareFuture and get treatments to people with rare conditions faster. Read it here:
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Thank you for watching and sharing! 🤗.
Listening to Rick @RareBeacon speaking about the #RareDisease Accelerating #Research and Development report by @lifearc1
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Hear from our CEO, Dr Rick Thompson on why @lifearc1's new report matters and why he jumped at the chance to be involved in its Task Force!. Watch now:
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RT @ERDERA_org: Last chance to make your voice heard!🗣️ #ERDERA has launched a survey to explore how #RareDisease patients can contribute….
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RT @CarersIreland: Our evening group for parents caring for a child with a hidden disability meets again via Zoom this Wednesday 9th July a….
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RT @CharityEos: 🟣 Proud to represent patient voices at #IES2025 in Montpellier. Grateful to the organisers for the opportunity to connect w….
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So pleased to see this @JsChallenge and Freddie!.
We spotted @JsChallenge (and Freddie) front and centre in London this week!. We are privileged to have had a part in designing this campaign for such a wonderful charity. Learn more about them and what they do at
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RT @eurordis: Having a clear set of rules that are systematically implemented is an essential building block for good patient partnership.….
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Our Science team had a blast down in #London at @lifearc1's official launch of the NEW Accelerating R&D for rare disease in the UK: An opportunity to change millions of lives report!. Our CEO was part of the report's Task Force + a proud member helping to #ChangeTheRareFuture
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