Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.

Joined March 2012
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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-โ€ฆ
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Monday! ๐—ฅ๐—ฎ๐—ฟ๐—ฒ๐—น๐˜† ๐—›๐—ฒ๐—ฎ๐—ฟ๐—ฑ, ๐—ฆ3, ๐—˜๐—ฝ๐—ถ๐˜€๐—ผ๐—ฑ๐—ฒ 3: ๐—œ๐—ป๐—ฑ๐˜‚๐˜€๐˜๐—ฟ๐˜† ๐—ฐ๐—ผ๐—น๐—น๐—ฎ๐—ฏ๐—ผ๐—ฟ๐—ฎ๐˜๐—ถ๐—ผ๐—ป๐˜€ Join us as we delve into the world of industry & patient organisation collaborations ๐Ÿค Thank you to our speakers: @ABPI_UK @weareMSUK Astellas Pharma rarebeacon.org/rarely-heard/โ€ฆ
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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 whoโ€™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-fโ€ฆ
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Beacon for Rare Diseases retweeted
1 Dec 2025
๐Ÿšจ Today's USโ€“UK trade agreement "...is an important step towards ensuring patients can access the innovative medicines needed to improve wider NHS health outcomes.โ€ Read the full response from our Chief Executive @TorbettR abpi.org.uk/media/news/2025/โ€ฆ @DHSCgovuk @SciTechgovuk
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Beacon for Rare Diseases retweeted
2 Dec 2025
Our latest report on the state of UK industry clinical trials is out. โœ…The number of UK clinical trials is up โŒPatient participation is down - and is at its lowest since 2017/18 ๐ŸšจAction is underway, we recommend further measures to help Read more: abpi.org.uk/publications/uk-โ€ฆ
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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 ๐ŸŒŽ Download the Framework and share! zenodo.org/records/17279486
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Looking great out there! Thank you for exhibiting at #RareShowcase25 โ˜บ๏ธ We hope you made valuable new connections!
26 Nov 2025
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! ๐Ÿคฉ Thank YOU for coming to #RareShowcase25 yesterday and for the very kind words ๐Ÿงก
Absolutely fantastic day at @RareBeacon Rare Disease Showcase in Manchester (Bridgewater Hall) ๐Ÿ™Œ๐Ÿป Brilliant opportunity to be able to be able to present/talk and listen to a variety of talks. Definitely feeling inspired ๐ŸŒŸ#RareShowcase25 #proud #grateful #raredisease
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Beacon for Rare Diseases retweeted
โœจNicoleโ€™s story shows that you can change the narrative and take control, no matter the challenges you face. Born with Primary Lymphedemaโ€“WILD Syndrome, sheโ€™s raising awareness and empowering others through fashion! ๐Ÿ“ฃShare your story: go.rarediseaseday.org/share #RareDiseaseDay
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Announced at #RareShowcase25! ๐—ง๐—ต๐—ฒ ๐—จ๐—ž ๐—ฅ๐—ฎ๐—ฟ๐—ฒ ๐——๐—ถ๐˜€๐—ฒ๐—ฎ๐˜€๐—ฒ๐˜€ ๐—™๐—ฟ๐—ฎ๐—บ๐—ฒ๐˜„๐—ผ๐—ฟ๐—ธ ๐˜„๐—ถ๐—น๐—น ๐—ฏ๐—ฒ ๐—ฒ๐˜…๐˜๐—ฒ๐—ป๐—ฑ๐—ฒ๐—ฑ ๐—ฏ๐˜† ๐—ฎ ๐˜†๐—ฒ๐—ฎ๐—ฟ Minster Dalton from the @DHSCgovuk, who is responsible for rare diseases, made the exciting announcement Learn more! rarebeacon.org/news/the-uk-rโ€ฆ
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The #RareShowcase25 is about to start!
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And the Beacon Bunch is rolling out! ๐Ÿš—โœŒ๏ธ 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! ๐Ÿคฉ
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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 PROVEโ„ข 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, Ayรงa & Burak, our heroes showing what life is like for the 300M people living with a rare disease. Full video ๐ŸŽฅ youtu.be/7J1oTfoIOGw Letโ€™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/articleโ€ฆ
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