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.
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!
Student Voice Prize 2021 winners announced!
The Student Voice Prize essay competition saw its eighth year in 2021 and we are delighted to now be able to announce the brilliant winners and runners up of this year’s competition!
Applications for cohort two of ‘Recruiting a Rare Board’ are now open!
Beacon has teamed up with Getting on Board to bring you an exciting new project, Recruiting a Rare Board! Recruiting a Rare Board is a trustee recruitment programme that will teach patient groups how to recruit and retain trustees, through a series of masterclasses,...
We’re rebranding! Findacure is becoming…
Big changes are coming on 1 February 2022! We’re rebranding! Find out from our CEO which name we’ve chosen for our charity and let us know what you think on Facebook, LinkedIn or Twitter. We hope you like it!
Recruiting a rare board- round one update!
See what the first cohort of our new trustee recruitment programme have been up to!
Apply to join a NICE working group for rare diseases
NICE is seeking 3 working group members to work on a short-life working group from January to March 2022! The purpose of this group is to help advise on the implementation of the Summary of Information (SIP) for Patients at NICE. Learn more and apply now!
We’re featured in Pharmafile!
Our Marketing and Engagement Manager, Blayne, wrote a piece on rare diseases for Pharmafile’s Autumn edition!
Her section of the magazine explores the ‘Diagnostic Odyssey’ and the psychological and logistical impact rare conditions have on patients and their families. Learn what her article discusses now!
Pitt Hopkins UK is seeking a treasurer, trustees and volunteers!
Can you help Pitt Hopkins UK? They are participating in our Recruiting a Rare Board programme and are seeking a treasurer, trustees and volunteers. Find out more below and apply!
Our CEO is featured in the ‘Rare Diseases’ Special Report in The Times!
Pick up a copy of The Times and Sunday Times to read the ‘Rare Diseases’ Special Report by Raconteur! Our CEO Dr Richard Thompson wrote a piece on pg. 12 about improving the care pathway for rare disease patients and families. He discusses care coordination, transition and more. Read the report now!
Get your FREE ticket to the International Rare Disease Showcase!
Tickets are now available for the International Rare Disease Showcase! Explore international collaborations that are driving rare disease forward. Come discover the impact and challenges of working in the rare space around the world. Whether you wish to attend a single session or three days of fun, claim your FREE ticket to The International Rare Disease Showcase today!