Beacon for Rare Diseases

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Beacon for Rare Diseases

Beacon for Rare Diseases

@RareBeacon

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 Katılım Mart 2012
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Beacon for Rare Diseases
Beacon for Rare Diseases@RareBeacon·
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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Beacon for Rare Diseases
Beacon for Rare Diseases@RareBeacon·
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-w…
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Beacon for Rare Diseases
Beacon for Rare Diseases@RareBeacon·
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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Beacon for Rare Diseases
Beacon for Rare Diseases@RareBeacon·
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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Beacon for Rare Diseases
Beacon for Rare Diseases@RareBeacon·
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/s…
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Beacon for Rare Diseases
Beacon for Rare Diseases@RareBeacon·
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-fo…
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Beacon for Rare Diseases retweetledi
ABPI
ABPI@ABPI_UK·
🚨 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/202… @DHSCgovuk @SciTechgovuk
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ABPI
ABPI@ABPI_UK·
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/u…
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Beacon for Rare Diseases
Beacon for Rare Diseases@RareBeacon·
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/172794…
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Beacon for Rare Diseases
Beacon for Rare Diseases@RareBeacon·
You left us feeling inspired with your lightning talk, Charlotte! 🤩 Thank YOU for coming to #RareShowcase25 yesterday and for the very kind words 🧡
Charlotte Proud@proudcharlotte1

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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Rare Disease Day
Rare Disease Day@rarediseaseday·
✨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
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Beacon for Rare Diseases
Beacon for Rare Diseases@RareBeacon·
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-ra…
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Dr Adam
Dr Adam@Adam_Tate1·
Being held on the train in the middle of nowhere, a signal has failed 😭 We've been here for 15 minutes with only 2 updates, train is starting to feel the -2°c outside @EastMidRailway @nationalrailenq @RareBeacon I may be a little late to the Manchester Rare Diseases showcase
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Beacon for Rare Diseases
Beacon for Rare Diseases@RareBeacon·
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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Charlotte Proud
Charlotte Proud@proudcharlotte1·
#NHS1000miles weekly check in 20.1 miles ✔️ Awful weather (including a rainy walk to work this morning and tonight) and a huge fear of falling over ❄️ ☔️ Excited for a new week and presenting at @RareBeacon Rare Disease Conference in Manchester on Wednesday 1509.6 miles YTD
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Keşfet

@ABPI_UK @TorbettR @DHSCgovuk @SciTechgovuk @Adam_Tate1 @EastMidRailway @nationalrailenq @J_Critcher