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
- Tweets 22,381
- Following 9,916
- Followers 11,889
- Likes 13,575
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From 2026, Beacon will no longer be using X. Our account will stay visible so people can find us, but we will not be posting or monitoring messages.
You can follow us on Instagram, Facebook and LinkedIn, and keep up to date via our website and newsletter.
rarebeacon.org
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From 2026, Beacon will no longer be using X. Our account will stay visible so people can find us, but we will not be posting or monitoring messages.
You can follow us on Instagram, Facebook and LinkedIn, and keep up to date via our website and newsletter.
rarebeacon.org
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We also work with researchers, clinicians, policymakers and life science professionals to build a collaborative rare disease ecosystem, where patient voices are central to decisions that shape research, care and policy. Visit our website to explore our programmes.
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If you are affected by a rare condition and in need of support, visit our resources page for signposting, guidance and trusted organisations who may be able to help. You can also explore our training, toolkits and community events.
rarebeacon.org/about-us/who-…
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Monday!
𝗥𝗮𝗿𝗲𝗹𝘆 𝗛𝗲𝗮𝗿𝗱, 𝗦3, 𝗘𝗽𝗶𝘀𝗼𝗱𝗲 3: 𝗜𝗻𝗱𝘂𝘀𝘁𝗿𝘆 𝗰𝗼𝗹𝗹𝗮𝗯𝗼𝗿𝗮𝘁𝗶𝗼𝗻𝘀
Join us as we delve into the world of industry & patient organisation collaborations 🤝
Thank you to our speakers: @ABPI_UK @weareMSUK Astellas Pharma
rarebeacon.org/rarely-heard/…
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Beacon is proud to welcome five new trustees to our board in our 13th year of operation!
Meet the new faces joining the Beacon team who’ll be helping us to ensure that no one faces their rare journey alone.
Learn more about our new trustees here!
rarebeacon.org/news/beacon-f…
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Beacon for Rare Diseases retweeted
🚨 Today's US–UK trade agreement "...is an important step towards ensuring patients can access the innovative medicines needed to improve wider NHS health outcomes.”
Read the full response from our Chief Executive @TorbettR abpi.org.uk/media/news/2025/… @DHSCgovuk @SciTechgovuk
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Beacon for Rare Diseases retweeted
Our latest report on the state of UK industry clinical trials is out.
✅The number of UK clinical trials is up
❌Patient participation is down - and is at its lowest since 2017/18
🚨Action is underway, we recommend further measures to help
Read more: abpi.org.uk/publications/uk-…
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Rare Diseases International released the Framework for Improving Quality of Life for Persons Living with a Rare Disease (QoL Framework) shaped by the insights & lived experiences of RDI members/global rare community 🌎
Download the Framework and share!
zenodo.org/records/17279486
ALT A woman helps her toddler walk on a log in a park, showcasing child support and family bonding.
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Looking great out there!
Thank you for exhibiting at #RareShowcase25 ☺️
We hope you made valuable new connections!
Set up ready at the @rarebeacon Rare Diseases Manchester Showcase.
Ready to build awareness of #Fahrs and #PFBC along with making new professional relationships.
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You left us feeling inspired with your lightning talk, Charlotte! 🤩
Thank YOU for coming to #RareShowcase25 yesterday and for the very kind words 🧡
Absolutely fantastic day at @RareBeacon Rare Disease Showcase in Manchester (Bridgewater Hall) 🙌🏻 Brilliant opportunity to be able to be able to present/talk and listen to a variety of talks. Definitely feeling inspired 🌟#RareShowcase25 #proud #grateful #raredisease
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Beacon for Rare Diseases retweeted
✨Nicole’s story shows that you can change the narrative and take control, no matter the challenges you face.
Born with Primary Lymphedema–WILD Syndrome, she’s raising awareness and empowering others through fashion!
📣Share your story: go.rarediseaseday.org/share
#RareDiseaseDay
ALT Portrait of Nicole from Puerto Rico smiling brightly in front of a graffiti wall. She wears a denim jacket and an orange compression glove. Text reads: “Nicole’s Story! Primary Lymphedema – WILD Syndrome. Puerto Rico. Share Yours!”
ALT “I was born with a swollen arm. That’s the reason why you see me wearing the colourful gloves in photos...and wear 7 pieces of compression garments EVERY day. I am passionate of changing the narrative associated with the condition, because after all, I am not alone and my challenges are not that unusual. After thousands of posts, millions of views, a couple dozen of podcast episodes, I can confidently say we have crated a community that is stronger than ever...”
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Announced at #RareShowcase25!
𝗧𝗵𝗲 𝗨𝗞 𝗥𝗮𝗿𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲𝘀 𝗙𝗿𝗮𝗺𝗲𝘄𝗼𝗿𝗸 𝘄𝗶𝗹𝗹 𝗯𝗲 𝗲𝘅𝘁𝗲𝗻𝗱𝗲𝗱 𝗯𝘆 𝗮 𝘆𝗲𝗮𝗿
Minster Dalton from the @DHSCgovuk, who is responsible for rare diseases, made the exciting announcement
Learn more!
rarebeacon.org/news/the-uk-r…
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And the Beacon Bunch is rolling out! 🚗✌️
We're headed up to Manchester to get everything ready for #RareShowcase25 tomorrow
We can't wait to welcome over 150 rare disease advocates in less than 24 hours
SEE YOU SOON! 🤩
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So happy to see Mel and her family featured!
A lifeline starts with you.
Contribute to help aid nano-rare disease drug discovery and development efforts this #GivingTuesday
nlorem.org/donate/
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Thank you to our Gold Sponsor @AdelphiValues for supporting the #RareShowcase25!
Without their support, the showcase wouldn't be possible
Members from Adelphi Real World will join us at the showcase, so view their fun fact & learn about their work: ow.ly/6ns750XtYJL
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Thank you to our Gold Sponsor @AdelphiValues for supporting the #RareShowcase25!
Without their support, the showcase wouldn't be possible
Members from Adelphi Values PROVE™ will join us at the showcase, so view their fun fact & learn about their work: ow.ly/6ns750XtYJL
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Beacon for Rare Diseases retweeted
The 100-day countdown to #RareDiseaseDay begins!
Meet Mak, Linges, Micah, Ayça & Burak, our heroes showing what life is like for the 300M people living with a rare disease.
Full video 🎥 piped.video/7J1oTfoIOGw
Let’s bring about equity in more ways than even we can imagine!
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Catch @StargardtsC TONIGHT on BBC One at 7 pm GMT!
They'll be featured on @BBCTheOneShow - One Big Thank You for going the extra mile to help others in their community
We couldn't be happier to see them being thanked and featured on a national stage!
bbc.co.uk/programmes/article…
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