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.
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http://www.rarebeacon.org 01-03-2012 16:28:52
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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…
🦓 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
🔔 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
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
Meet Morven-May MacCallum! 👋 She shares her story living with Lyme Disease with RARE Revolution Magazine 🧡 Read the full article here: ow.ly/x1OJ50T9LhC
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
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
🔔 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
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
💡 Explore Global Genes' new resource aimed at supporting individuals who have recently received a diagnosis. Check out their advice here: 👇 ow.ly/jVFC50Slt6t