News
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.
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Please note: We were previously known as Findacure before rebranding as Beacon in 2022.
Shape rare disease policy in the UK!
What does the future policy for rare conditions need to address? Share your input on what a future UK policy for rare conditions should look like...
The Student Voice Prize turns 10!
The Student Voice Prize international essay competition has turned 10
Our CEO was interviewed by the ABPI for Rare Disease Day 2026
The theme of this year's Genetic Alliance UK Rare Disease Day is equity. In The Association of the British Pharmaceutical Industry (ABPI)'s Q&A,...
We’re hiring a new Digital Content Officer
We’re excited to share an opportunity to join Beacon as our new Digital Content Officer
Christmas closure dates
The Beacon office is now closed while our team enjoyed a well earned break over the festive period.The office will be closed from Wednesday 24th of...
Get involved in the Global Patient Voices Project!
Update: March 2026You can watch the final pRxTrialPort short film now, which was shared at a conference in London in late February 2026! The Global...
What the latest ABPI report and UK–US trade deal mean for rare diseases
This week saw the release of ABPI’s latest annual report on the state of industry clinical trials, as well as the announcement of a new UK-USA trade...
Beacon for Rare Diseases introduces five new trustees
Beacon is proud to welcome five new trustees to our board in our 13th year of operation! Meet the new faces joining the Beacon team who'll be...
The UK Rare Diseases Framework will be extended by a year!
Announced at #RareShowcase25! The rare disease framework has been the central pillar of UK rare disease policy for the past five years. The...
Saying goodbye to Edna
After 11 remarkable years, we say a heartfelt thank you to one of our founding trustees, Edna, as she steps down from Beacon’s Board of Trustees....
Could you be our next Senior Patient and Scientific Engagement Officer?
We're looking for a Senior Patient and Scientific Engagement Officer to join the Beacon team
We’re hiring! Join our team
Help shape the next chapter of Beacon: for rare diseases as our new Admin and Operations Officer
Beacon is seeking new Trustees!
We're looking for new Trustees to join our Board!Are you passionate about making a meaningful impact in the rare diseasecommunity? Are you...
LifeArc and Genetic Alliance UK launch new report
Today, the not-for-profit medical research organisation LifeArc launched a new report with the aim of driving meaningful change for people living...
Join our Patient Group Engagement Committee!
Applications are now open for our Patient Group Engagement Committee (PGEC)! This is an exciting opportunity to help shape Beacon’s work and ensure...
Shape rare disease policy in the UK!
What does the future policy for rare conditions need to address? Share your input on what a future UK policy for rare conditions should look like...
The Student Voice Prize turns 10!
The Student Voice Prize international essay competition has turned 10![ba_advanced_divider active_element="image"...
Our CEO was interviewed by the ABPI for Rare Disease Day 2026
The theme of this year's Genetic Alliance UK Rare Disease Day is equity. In The Association of the British Pharmaceutical Industry (ABPI)'s Q&A,...
We’re hiring a new Digital Content Officer
We’re excited to share an opportunity to join Beacon as our new Digital Content Officer![ba_advanced_divider active_element="image"...
Christmas closure dates
The Beacon office is now closed while our team enjoyed a well earned break over the festive period.The office will be closed from Wednesday 24th of...
Get involved in the Global Patient Voices Project!
Update: March 2026You can watch the final pRxTrialPort short film now, which was shared at a conference in London in late February 2026! The Global...
What the latest ABPI report and UK–US trade deal mean for rare diseases
This week saw the release of ABPI’s latest annual report on the state of industry clinical trials, as well as the announcement of a new UK-USA trade...
Beacon for Rare Diseases introduces five new trustees
Beacon is proud to welcome five new trustees to our board in our 13th year of operation! Meet the new faces joining the Beacon team who'll be...
The UK Rare Diseases Framework will be extended by a year!
Announced at #RareShowcase25! The rare disease framework has been the central pillar of UK rare disease policy for the past five years. The...
Saying goodbye to Edna
After 11 remarkable years, we say a heartfelt thank you to one of our founding trustees, Edna, as she steps down from Beacon’s Board of Trustees....
Could you be our next Senior Patient and Scientific Engagement Officer?
We're looking for a Senior Patient and Scientific Engagement Officer to join the Beacon team![ba_advanced_divider active_element="image"...
We’re hiring! Join our team
Help shape the next chapter of Beacon: for rare diseases as our new Admin and Operations Officer![ba_advanced_divider active_element="image"...
Beacon is seeking new Trustees!
We're looking for new Trustees to join our Board!Are you passionate about making a meaningful impact in the rare diseasecommunity? Are you...
LifeArc and Genetic Alliance UK launch new report
Today, the not-for-profit medical research organisation LifeArc launched a new report with the aim of driving meaningful change for people living...
Join our Patient Group Engagement Committee!
Applications are now open for our Patient Group Engagement Committee (PGEC)! This is an exciting opportunity to help shape Beacon’s work and ensure...