Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile
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.

ID: 510484741

linkhttp://www.rarebeacon.org calendar_today01-03-2012 16:28:52

22,22K Tweet

11,11K Followers

10,10K Following

Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

Submit a lightning talk for the Cambridge #RareShowcase25 - share your story or spotlight your work and ideas! ⚡ Applications close this Friday! Don’t miss out - submit a lightning talk proposal when you register before the 9th May. ⏰ ow.ly/rE6s50VGVjB

Submit a lightning talk for the Cambridge #RareShowcase25 - share your story or spotlight your work and ideas! ⚡

Applications close this Friday! Don’t miss out -  submit a lightning talk proposal when you register before the 9th May. ⏰

ow.ly/rE6s50VGVjB
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

May is #Eosinophilic Awareness Month! #EAM2025 💜 We’re proud to support @charityeos in spotlighting #EGID signs and symptoms to drive earlier diagnosis and better care. Find out more about their weekly toolkits and resources: 👉 ow.ly/pS0050VNw70 #EosinophilicAwareness

Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

Get ready to transform the way you build your network with our engaging, hands-on, Networking Masterclass - designed to boost your confidence and impact. 🌟 📅 25th June | 10:00-16:30 📍 The Royal Institution, London Register here: 👇 ow.ly/MaR950VyKRi

Get ready to transform the way you build your network with our engaging, hands-on, Networking Masterclass - designed to boost your confidence and impact. 🌟

đź“… 25th June | 10:00-16:30
📍 The Royal Institution, London

Register here: 👇
ow.ly/MaR950VyKRi
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

📢 Check out our recent blog! Read a summary of what the World Health Assembly (WHA) Resolution on Rare Diseases calls for, and when it could be sanctioned by the World Health Organization, World Health Organization (WHO). Read more: 👇 ow.ly/5w9L50VPPbR

📢 Check out our recent blog!

Read a summary of what the World Health Assembly (WHA) Resolution on Rare Diseases calls for, and when it could be sanctioned by the World Health Organization, <a href="/WHO/">World Health Organization (WHO)</a>.

Read more: 👇

ow.ly/5w9L50VPPbR
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

We're supporting #EosinophilicAwarenessMonth! Too many people suffer because #eosinophilic diseases go unrecognised. 💜Let’s change that. 👉Learn more: eosnetwork.org #EAM2025 @charityeos

We're supporting #EosinophilicAwarenessMonth!

Too many people suffer because #eosinophilic diseases go unrecognised.

💜Let’s change that. 
👉Learn more: eosnetwork.org 

#EAM2025 @charityeos
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

🧬 Behind the Gene shares powerful, personal stories from those affected by Huntington’s disease. It’s time to raise awareness and challenge stigma in support of the Huntington's disease community. 👉 Find out more: ow.ly/s58t50VPY01 #BehindTheGene Huntington's Disease Association

🧬 Behind the Gene shares powerful, personal stories from those affected by Huntington’s disease.

It’s time to raise awareness and challenge stigma in support of the Huntington's disease community.

👉 Find out more: ow.ly/s58t50VPY01
#BehindTheGene 

<a href="/HDA_tweeting/">Huntington's Disease Association</a>
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

Today is Global Accessibility Awareness Day! 📢 🔔 We’ve added the ReachDeck toolbar to our Resources Hub and website to support accessible browsing – including text-to-speech, translation, and screen masking. Find out more here: ow.ly/4OE050VT5a7 #GAAD #Accessibility

Today is Global Accessibility Awareness Day! 📢

🔔 We’ve added the ReachDeck toolbar to our Resources Hub and website to support accessible browsing – including text-to-speech, translation, and screen masking.

Find out more here: 

ow.ly/4OE050VT5a7

#GAAD #Accessibility
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

Join Wales Gene Park for their next Virtual Public Genomics Café! 💻 A chance to hear exciting talks on genetics and genomics from leading experts and those with lived experience of genetic conditions. Register here: 👇 ticketsource.co.uk/wales-gene-par…

Join <a href="/WalesGenePark/">Wales Gene Park</a> for their next Virtual Public Genomics Café! 💻

A chance to hear exciting talks on genetics and genomics from leading experts and those with lived experience of genetic conditions.

Register here: 👇

ticketsource.co.uk/wales-gene-par…
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

🧠 This #MentalHealthAwarenessWeek, why not revisit one of our recent blogs? 🔔 In response to a report from NCVO, Mary Rose explored the growing mental health crisis facing leaders of small organisations – and why it’s time for change. Read more: 👇 ow.ly/vckM50VBtff

đź§  This #MentalHealthAwarenessWeek, why not revisit one of our recent blogs?

🔔 In response to a report from <a href="/NCVO/">NCVO</a>, Mary Rose explored the growing mental health crisis facing leaders of small organisations – and why it’s time for change.

Read more: 👇
ow.ly/vckM50VBtff
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

📢Lack of awareness leads to unnecessary tests and misdiagnosis. Support a better understanding of #eosinophilic diseases with @charityeos! 👉Learn more: eosnetwork.org #EAM2025 #eosnetwork

📢Lack of awareness leads to unnecessary tests and misdiagnosis. Support a better understanding of #eosinophilic diseases with @charityeos!

👉Learn more: eosnetwork.org
#EAM2025 #eosnetwork
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

🌟 Less than one month to go until the Cambridge #RareShowcase25! 🌟 What to expect? 👇 An exciting evening of innovation, networking, and storytelling from across the rare disease community. Don't miss out, secure your tickets now! 🎟️ ow.ly/Y8u350VT8jR

🌟 Less than one month to go until the Cambridge #RareShowcase25! 🌟

What to expect? 👇

An exciting evening of innovation, networking, and storytelling from across the rare disease community. 

Don't miss out, secure your tickets now! 🎟️

ow.ly/Y8u350VT8jR
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

Whether you live with a rare condition, support someone who does, or work in the field – your voice has the power to raise awareness and spark action. Interested in sharing your rare journey on our blog? We’d love to hear from you! đź’™ đź“© Get in touch: [email protected]

Whether you live with a rare condition, support someone who does, or work in the field – your voice has the power to raise awareness and spark action.

Interested in sharing your rare journey on our blog? We’d love to hear from you! 💙

đź“© Get in touch: niamh@rarebeacon.org
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

🚀 Ready to grow your rare disease network with confidence? Whether you're looking to spark collaborations, connect with funders, or simply share your story more effectively - our Networking Masterclass is here to help. 💬🤝 Sign up here: 👇 ow.ly/MaR950VyKRi

🚀 Ready to grow your rare disease network with confidence?

Whether you're looking to spark collaborations, connect with funders, or simply share your story more effectively - our Networking Masterclass is here to help. 💬🤝

Sign up here: 👇

ow.ly/MaR950VyKRi
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

Today is World NF2 Awareness Day! Despite its profound impact on those with NF2 and their families, NF2 remains largely unknown. NF2 BioSolutions UK & Europe need your support to amplify their voice, and raise awareness for NF2 research. Find out more: 👇 nf2biosolutions.org/nf2-biosolutio…

Today is World NF2 Awareness Day!

Despite its profound impact on those with NF2 and their families, NF2 remains largely unknown.

<a href="/nf2biosolution1/">NF2 BioSolutions UK & Europe</a> need your support to amplify their voice, and raise awareness for NF2 research.

Find out more: 👇

nf2biosolutions.org/nf2-biosolutio…
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

🧬 Behind the Gene shares powerful, personal stories from those affected by Huntington’s disease. It’s time to raise awareness and challenge stigma in support of the Huntington's disease community. 👉 Find out more: ow.ly/s58t50VPY01 #BehindTheGene Huntington's Disease Association

🧬 Behind the Gene shares powerful, personal stories from those affected by Huntington’s disease.

It’s time to raise awareness and challenge stigma in support of the Huntington's disease community.

👉 Find out more: ow.ly/s58t50VPY01
#BehindTheGene 

<a href="/HDA_tweeting/">Huntington's Disease Association</a>
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

🚀 Ready to grow your rare disease network with confidence? Whether you're looking to spark collaborations, connect with funders, or simply share your story more effectively - our Networking Masterclass is here to help. Sign up here: 👇 ow.ly/MaR950VyKRi

🚀 Ready to grow your rare disease network with confidence?

Whether you're looking to spark collaborations, connect with funders, or simply share your story more effectively - our Networking Masterclass is here to help.

Sign up here: 👇

ow.ly/MaR950VyKRi
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

Join Get Grants at their FREE Virtual Conference 2025! Enjoy two days of expert fundraising advice, top tips, Q&As, networking, peer-support, and lots of chat! Find out more here: 👇 getgrants.org.uk/free-virtual-c…

Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

Join Get Grants at their FREE Virtual Conference 2025! 📅 7th & 8th October Enjoy two days of expert fundraising advice, top tips, Q&As, networking, peer-support, and lots of chat! Find out more here: 👇 getgrants.org.uk/free-virtual-c…

Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

🎥 Meet Fergus! He’s sharing his story to help others recognise the signs of Eosinophilic Gastrointestinal Diseases. 💜 Watch, learn, and share to raise awareness. 👉 Download guide here: eosnetwork.org/eoe-the-signs-… #EAM2025 @charityeos #eosnetwork