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

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

Explore NCVO 's resource on 'how charities can tackle misinformation'. ✅ Verify information ✅ Train your team ✅ Deal with misinformation quickly Read more: ow.ly/m1ph50T32TN

REMEDi4ALL (@remedi4all) 's Twitter Profile Photo

The #iDR conference series unites #DrugRepurposing stakeholders to share results, spark ideas, and prioritise patient perspectives👥. Mary Rose Roberts, COO at Beacon for Rare Diseases, highlights putting patients first in #DrugRepurposing. More on #iDR here ➡️ remedi4all.org/idr-conference…

The #iDR conference series unites #DrugRepurposing stakeholders to share results, spark ideas, and prioritise patient perspectives👥. 

Mary Rose Roberts, COO at <a href="/RareBeacon/">Beacon for Rare Diseases</a>, highlights putting patients first in #DrugRepurposing. 

More on #iDR here ➡️ remedi4all.org/idr-conference…
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

Read IQVIA 's blog on how patient advocacy groups are powering rare disease research! Explore: 👉 Patient Recruitment and Engagement 👉 Patient-Centric Trial Design 👉 Disease Education ow.ly/WonR50T3K4L

Read <a href="/IQVIA_global/">IQVIA</a> 's blog on how patient advocacy groups are powering rare disease research!

Explore:

👉 Patient Recruitment and Engagement
👉 Patient-Centric Trial Design
👉 Disease Education

ow.ly/WonR50T3K4L
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

Check out one of our new courses on 'the LGBTQ+ rare reality' 🌈 This courses aims to support your group in advocating for inclusivity, awareness and healthcare practices for members of the LGBTQ+ community living with a rare disease. Enrol here: ow.ly/4Hn050SyEpv

Check out one of our new courses on 'the LGBTQ+ rare reality' 🌈

This courses aims to support your group in advocating for inclusivity, awareness and healthcare practices for members of the LGBTQ+ community living with a rare disease. 

Enrol here:

ow.ly/4Hn050SyEpv
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

👉 DSC are offering free resources for London-based charities! Access funders, online conferences, digital books and online courses. 🧑‍💻 Find out more: ow.ly/fF5w50SUtKn

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

🦓 Rare Patient Voice have a new research opportunity for recruiting caregivers of patients diagnosed with sickle cell! This is a 60 minute web assisted phone interview and compensation is £90. Find out more here: 👇 ow.ly/BUqZ50SOWzz

🦓 <a href="/rarepatientvoic/">Rare Patient Voice</a> have a new research opportunity for recruiting caregivers of patients diagnosed with sickle cell!

This is a 60 minute web assisted phone interview and compensation is £90.

Find out more here: 👇

ow.ly/BUqZ50SOWzz
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

🔔 As part of #TrusteesWeek, Getting On Board 's Festival of Trusteeship is taking place on the 4th-8th November. Just getting started on your trustee journey? Or have you been a trustee for years? Register now! Find out more: ow.ly/E2f650SYkWT

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

Register for our upcoming webinar! 💻The fundamentals of fundraising without a fundraiser 📅 24th September, 11:00am-12:30pm Get advice and guidance to help leverage your existing resources and hit your fundraising goals! Find out more: ow.ly/I4c850SUsmJ

Register for our upcoming webinar!

💻The fundamentals of fundraising without a fundraiser

📅 24th September, 11:00am-12:30pm

Get advice and guidance to help leverage your existing resources and hit your fundraising goals!

Find out more:

ow.ly/I4c850SUsmJ
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

Explore pharmaphorum 's recent article on "Power to the patients: Patient organisations enabling drug development". “Patients are the people who know best about living with their disease and what symptoms most need addressing." Read more: ow.ly/3O8E50T9C1Z

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

Are you ready to grow your team? Join our upcoming webinar and equip yourself with the knowledge to confidently grow your charity by hiring the right talent. 📅 11th October 2024,11:00 - 12:30pm BST Find out more: 👇 ow.ly/kHSM50T9OVx

Are you ready to grow your team?

Join our upcoming webinar and equip yourself with the knowledge to confidently grow your charity by hiring the right talent.

📅 11th October 2024,11:00 - 12:30pm BST

Find out more: 👇

ow.ly/kHSM50T9OVx
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

Introducing the Vascular Voice Network! HBA Support is exploring a collaborative platform for those affected by vascular conditions. 🙌 Have your say in how it could be useful for your rare condition or common disease community. Find out more: 👇 ow.ly/EtLT50T9NBp

Introducing the Vascular Voice Network!

<a href="/hba_support/">HBA Support</a> is exploring a collaborative platform for those affected by vascular conditions. 🙌

Have your say in how it could be useful for your rare condition or common disease community.

Find out more: 👇

ow.ly/EtLT50T9NBp
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

Have you signed up to our upcoming fundraising webinar? 💻The fundamentals of fundraising without a fundraiser 📅 24th September, 11:00am-12:30pm Get advice and guidance to help leverage your existing resources and hit your fundraising goals! 🎯 👇 ow.ly/I4c850SUsmJ

Have you signed up to our upcoming fundraising webinar?

💻The fundamentals of fundraising without a fundraiser
📅 24th September, 11:00am-12:30pm

Get advice and guidance to help leverage your existing resources and hit your fundraising goals! 🎯

👇
ow.ly/I4c850SUsmJ
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

We're developing a new course on accessible events! Share your experiences, tips and cost-effective solutions for making events more accessible and inclusive. 📢 ✉️ Email our Projects Officer, Gabriel at [email protected] for more details. #Accessibility

We're developing a new course on accessible events!

Share your experiences, tips and cost-effective solutions for making events more accessible and inclusive. 📢

✉️ Email our Projects Officer, Gabriel at gabriel@rarebeacon.org for more details. 

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

🚨 The Student Voice Prize Patient Pairing Scheme is now OPEN! Connect with future medical professionals to share the unique challenges of living with a rare disease. 📅 Open until 30th Oct 2024 🔗 ow.ly/KFGO50T8vN7 #SVP24

🚨 The Student Voice Prize Patient Pairing Scheme is now OPEN! 

Connect with future medical professionals to share the unique challenges of living with a rare disease.

📅 Open until 30th Oct 2024

🔗 ow.ly/KFGO50T8vN7

#SVP24
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

Enrol in one of our new courses! 💻 How to select appropriate patient-reported outcome measures and advocate for these to researchers Learn more about patient-reported outcome measures in research, and what you can do to help your patient community. ow.ly/yfwM50SAh5u

Enrol in one of our new courses!

💻 How to select appropriate patient-reported outcome measures and advocate for these to researchers

Learn more about patient-reported outcome measures in research, and what you can do to help your patient community.

ow.ly/yfwM50SAh5u
Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

🔔 As part of #TrusteesWeek, Getting On Board 's Festival of Trusteeship is taking place on the 4th-8th November. Just getting started on your trustee journey? Or have you been a trustee for years? Register now! Find out more: ow.ly/E2f650SYkWT

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

Explore Charity Digital 's resource on the Charity Commission! Learn more about: 💡 History of the Charity Commission 💡Role of the Commission in today’s society 💡How the Commission registers and regulates the charity sector 🔗 ow.ly/E3Pi50SObJj

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

💡 Explore Global Genes' new resource aimed at supporting individuals who have recently received a diagnosis. Check out their advice here: 👇 ow.ly/jVFC50Slt6t