News
View all the news that’s fit to print!
We publish our latest news and updates in one place to make staying in the know simple. Follow our latest event announcements, project updates, open recruitment calls and features in the media here.
News
View all the news that’s fit to print!
We publish our latest news and updates in one place to make staying in the know simple. Follow our latest event announcements, project updates, open recruitment calls and features in the media here.
If you’d like to be amongst the first to know about our event announcements and project updates, subscribe to our newsletter. Our Community Mailing List gives you first access to newly released tickets and keeps you connected with our charity news. Subscribe today!
Please note: We were previously known as Findacure before rebranding as Beacon in 2022.
New ONLINE workshop with Genetic Alliance UK and Rareminds!
We have joined forces with Genetic Alliance UK and Rareminds to bring you a 4-part online workshop that’s focused on building rare resilience. Register now to gain the tools and strategies needed to look after their own wellbeing, manage expectations, avoid burnout and deal with the distress of others.
Beacon joins the REMEDi4ALL consortium!
Beacon has joined the EU-funded REMEDi4ALL drug repurposing project! Learn more about this UK and EU collaboration now.
We took over the UK airwaves!
We took over the UK airwaves! Beacon was featured on London Live TV, Modern Mindset and more. Our campaign reached 2.1 million! Watch two of our interviews now.
Beacon launches its new Resources Hub
We are pleased to say that our new Resources Hub is now live, and open for registrations. This platform has been designed and built by our team, with the aim of making our e-learning content more engaging and flexible.
We’re hiring for four new positions!
Join our team as either our new Executive Assistant, Fundraising Officer, Scientific Officer or Senior Scientific Officer! View each job description now and check out our benefits. Apply today!
Apply to join Jeans for Genes Grants Panel
Jeans for Genes has exciting news! The charity is looking for two individuals to join their newly created Grants Panel. Apply by 1 August!
Teddington Trust rebrands after merging with XP Support Group (XPSG)
Teddington Trust rebrands as Action for XP after merging with XP Support Group (XPSG), signaling the charity’s next chapter of supporting the Xeroderma Pigmentosum (XP) community!
Monthly roundup: June edition!
Join us at the end of each month as we look back on major developments that have occurred within the rare disease space. Read all the June news!
FOP Friends trustee receives a British Empire Medal in Queen’s Jubilee Honours List
FOP Friends trustee, Helen Bedford-Gay, was named to the Queen’s Jubilee Honours List. Helen was one of 304 recipients of a British Empire Medal (BEM)! Learn more now.
Meet The Willow Foundation
The Willow Foundation prioritises young adults who are living with a rare condition by providing special day experiences free of charge to young people aged 16 to 40 and their families. Learn more about this unique charity from the Willow team and apply for your own special day out or treat box today!
EURORDIS ECRD: Conference to pave the way for the next decade of rare diseases
We’re pleased to announce that our rare disease charity is an official media partner of EURORDIS’ 2022 ECRD. Learn more and register now!
Advances in rare disease made thus far in 2022
Thinking of submitting a lightning talk proposal for The Cambridge Rare Disease Showcase? View some rare disease advances thus far in 2022 for inspiration!
The team is pleased to announce four job role changes!
As a small rare disease charity, our team is constantly learning, evolving and taking on new, additional responsibilities. Please join us in congratulating Mary Rose, Laura, Philippa and Hannah on their new roles!
Patient groups are a lifeline for those living with cystinosis
Patient advocacy groups like Cystinosis Research Network (CRN) are a lifeline for those living with cystinosis. Learn the importance of patient groups and share in support of the 5th Annual Cystinosis Awareness Day!
Farewell and thank you to our graphic design intern, Freya and Costello Medical!
Farewell and thank you to our graphic design intern, Freya and Costello Medical! We cannot thank Freya’s line manager, Charlotte, and the entire Costello Medical team enough for working with us to conduct a successful joint internship. Freya helped to rebrand our charity and will be greatly missed!
Don’t miss our webinar series!
Our new webinar series has been announced! ‘Developing your rare disease patient group team from the bottom up’ will consist of three webinars over the next three months looking at recruiting volunteers, finding members of staff and succession planning. Sign up for webinar 1!
May’s RareChat is here!
Join our next RareChat – Succession planning: how to know when it’s your time to go. If you’re in the process of stepping down from your group, have recently stepped down or are planning to do so in the future, come share your thoughts!
New online workshop: Understanding access and reimbursement
We are delighted to announce our next online workshop: Understanding access and reimbursement. To help you get to grips with the basics of what access and reimbursement are and understand how your patients can add value to the process.
The 2021 Student Voice Prize runner-up essays are LIVE on BioMed Central’s blog!
The 2021 Student Voice Prize runner-up essays are LIVE on BioMed Central’s blog! Read Meagan, Gavin and Ana Maria’s winning essay now. Zainab’s overall winning essay will be published on the Orphanet Journal of Rare Diseases on Rare Disease Day. Keep an eye out for it!
Watch “Reforming Rare Diseases: Making the Rare Path the Right One” this Rare Disease Day
We’re proud to have collaborated on the video ‘Reforming Rare Diseases: Making the Rare Path the Right One’ by Alexion Pharmaceuticals with our friends at Genetic Alliance UK, Medics4RareDiseases and Rare Revolution Magazine. Watch now!