Beacon for Rare Diseases
@RareBeaconBeacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
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Spare 60 seconds to take @WeAreSRUK's online Raynaud's symptom test. 📝 #BePartOfTheAnswer in helping unlock potential breakthroughs in diagnosis and treatment for debilitating autoimmune conditions like scleroderma. Find out more: 👇 sruk.co.uk/testme
Check out this feedback on our 'collaborating with medical professionals' course! 🌟 Want to strengthen your advocacy skills by collaborating with medical professionals? Enrol here: 👇 ow.ly/9Wz850U5SXj #FeedbackFriday
The rare disease quality statement project is asking you to complete their survey, to develop a set of statements which clearly set out what high-quality, sustainable care, treatment and management look like for rare diseases. 👉 Visit rarediseaseqs.org
Check out @Media_Trust 's guide for charities on sending press releases! Learn more on: 👉 Press release formatting 👉 Finding journalists 👉Emailing your press release Read here: ow.ly/czq450U1b4z
The Student Voice Prize 2024 competition is now closed! A big thank you to everyone who entered, and to all the patient groups that got involved in the patient pairing scheme. More updates coming soon! #SVP24
Register for our online workshop and get an introduction to charity finances! 📅 27th, 28th and 29th November Why should you join? 🙌 Build up your practical financial skills 🌟 Receive expert guidance 🧡 Increase your impact Secure your space 👉 ow.ly/64bj50TOfVG
It's #InternationalCJDAwarenessDay2024! 💛 CJD Support Network UK is the only UK charity dedicated to supporting the prion disease community. 👉 Find out more about the charity and how you can get support here: cjdsupport.co.uk #GloballyUnitedForPrionDiseaseAwareness
Submit your poster abstracts for #iDR25! 📢 Whether you’re a patient group representative, researcher or industry professional, you’ll get the chance to showcase your work to professionals in the drug repurposing field. 👉 Find out more: ow.ly/f0im50U0eqh
Don't forget! The Student Voice Prize competition is closing this week. 🔔 You have until Wednesday 13th November to submit your entries. ⏰ Good luck! 🔗 ow.ly/XPVi50U0sYC #SVP24
It's #TrusteesWeek! 🔔 Explore our top tip guide for recruiting trustees to your rare board. 🌟 You will learn: 👉 How to craft an engaging advert 👉 How to grow your network 👉 How to shortlist and interview trustees And more! ow.ly/Cxqr50U0jkE
We're supporting the @EpilepsyInst #Onein100 campaign to raise awareness, accelerate investment and advance research for the one in 100 people living with #Epilepsy. Find out more here: epilepsy-institute.org.uk/onein100
Call for poster abstracts for #iDR25! 📢 Whether you’re a patient group representative, researcher or industry professional, you’ll get the chance to showcase your work to professionals in the drug repurposing field. 👉 Find out more: ow.ly/IYhQ50U09Cp
Today we are celebrating twelve amazing years of Beacon! 🎉 We'd like to take this opportunity to thank everyone who has supported us and been a part of our journey so far. 🧡 Here's to the next twelve years and beyond!
Want to learn more on recruiting and managing trustees this #TrusteesWeek? 👀 Check out this previous webinar on establishing efficient trustee boards to set your organisation up for success! 🌟 Find out more: ow.ly/VMVg50U0h8M
💡 @CharityDigiOrg have published a guide for charities on #DataStorytelling! Learn how to transform raw data into compelling narratives that encourage action. Find out more: 👇 ow.ly/c7OO50TXX3P
Are you ready to tackle your charity’s finances ahead of the new year? If you’ve been putting it off, now’s your chance! 👀 Register for our online workshop and get an introduction to charity finances! 📅 27th, 28th and 29th November 👉 ow.ly/64bj50TOfVG
👉 @Media_Trust have shared tips on how charities can build and improve their brand image! 🗣️ Authentic communication 💡 Social Proof 🌐 Community management 💭 Thought management Find out more: ow.ly/EHlm50TXSts
We'd like to take the opportunity to highlight the sponsor of The Student Voice Prize, @emotive__agency 🌟 A huge thank to our sponsor, we greatly appreciate your generous support! Find out more about Emotive here: emotiveagency.com #SVP24
Secure your place at ICED2025, the International Conference for Ectodermal Dysplasia! 📅 10/06/2025 - 12/06/2025 ICED25 will highlight excellence within the rare disease field, and prompt discussion, reflection, and action. Get your free tickets: 👇 ow.ly/M6zT50TUmh8..
As part of our work in @REMEDi4ALL we're inviting YOU to explore our brand new online learning platform! 👀 Test the platform and share feedback to help us make it as impactful as possible. 🙌 📧 Email eve@rarebeacon.org to get involved! #DrugRepurposing #RareDiseases
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Who to follow
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EURORDIS-Rare Diseases Europe
@eurordis -
Cambridge Rare Disease Network (CamRARE)
@camraredisease -
Genetic Alliance UK
@GeneticAll_UK -
Rare Diseases Clinical Research Network
@rarediseasesnet -
NORD
@RareDiseases -
Global Genes
@GlobalGenes -
Rare Disease Day
@rarediseaseday -
Medics4RareDiseases
@M4RareDiseases -
Taylor Kane
@rarelikeher -
Effie Parks
@OnceUponAGene -
Beyond the Diagnosis
@BeyondtheDx -
CORD
@raredisorders -
RDI
@rarediseasesint -
RARE Revolution Magazine
@RareRevolutionM -
Rare Diseases
@CheckOrphan
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