Our history
Beacon was founded in 2012, initially operating under the name Findacure Foundation. In 2022, we re-branded to Beacon: for rare diseases.
Findacure (now Beacon) was founded in the summer of 2012 by Nick Sireau and Anthony (Tony) Hall.
Nick’s two sons were born with the ultra-rare genetic condition alkaptonuria (AKU or Black Bone Disease). The global prevalence of AKU is 1 in every 250,000 people. Those living with AKU can experience black bones and urine, early-onset severe osteoarthritis, multiple joint replacements and serious heart problems.
When Nick’s sons were diagnosed, a treatment for AKU didn’t exist. He quit his job to run the AKU Society in search of a treatment and a way of providing support for other families affected by the disease.
The AKU Society set a model for others to follow when establishing a patient support group for a rare condition. Nick knew that the rare disease community needed an organisation that could give patient groups the tools needed to form, grow and professionalise. Nick met Tony soon thereafter.


Tony, who is an expert in orphan drug development, was particularly interested in establishing an organisation that could build sustainable models for not-for-profit, rare disease drug development. He realised the need for a non-profit approach to improve patient health, while not breaking the NHS bank.
In 2012, Nick and Tony joined forces to set up the rare disease charity, Findacure!
Tony, who is an expert in orphan drug development, was particularly interested in establishing an organisation that could build sustainable models for not-for-profit, rare disease drug development. He realised the need for a non-profit approach to improve patient health, while not breaking the NHS bank.
In 2012, Nick and Tony joined forces to set up the rare disease charity, Findacure!

Check out our highlights

Summer of 2012
Nick and Tony came up with the idea of Findacure and established a board of trustees.

March 2012
Nick gave a TED talk about AKU and fundamental diseases.

7th November 2012
Nick and Tony registered Findacure as an official charity.

October 2013
We hired our first employee - Flóra, as Project Manager

January 2014
We ran our first ever workshop: How to access funding as a small patient group.

March 2014
We ran our first ever scientific conference: First Scientific Workshop on Fundamental Diseases.

October 2014
We launched the student essay competition: The Student Voice Prize

November 2014
We launched a first ever peer mentoring programme.

March 2015
We ran our first ever drug repurposing conference: Drug Repurposing for Fundamental Diseases.

April 2015
We launched our online E-learning portal.

2016 - 2017
We conducted our Social Impact Bond development project.

January 2016
Our co-founders published The Patient Group Handbook for patient groups that are looking to get involved in research and drug development.

October 2016
We hosted our first showcase: The Midlands Rare Disease Showcase.

May 2017
We hosted the Cardiff Rare Disease Showcase: our first event in Wales

November 2017
We joined MCDS-Therapy; an EU funded project to develop the first therapy for MCDS.

October 2018
We hosted our first event in Scotland: the Glasgow Rare Disease Showcase.

August 2019
We secured our first large, multi-year grant provided by the National Lottery Fund to support our unified patient group empowerment programme.

March 2020
In response to COVID-19, our staff began to work from home and started to strategise how to deliver our work online.

April 2020
We hosted our first ever online workshop, designed to help patient groups navigate the fundraising landscape during COVID-19.

November 2020
We hosted the Virtual Rare Disease Showcase, a 3-day conference hosted entirely online.

June 2021
We hosted our first, fully virtual, Drug Repurposing for Rare Diseases Conference.

September 2021
Our co-founders Nick Sireau and Tony Hall were recipients of the UK’s 1733rd and 1734th Point of Light, and were awarded their certificates by Daniel Zeichner, MP for Cambridge.

September 2021
We won the Cambridge Independent's 'design a mini moo' competition as part of the Cows about Cambridge art trail.

December 2021
We launched a brand new podcast: The Rarely Heard Podcast

1st February 2022
We re-branded and officially launched as Beacon for Rare Diseases

February 2022
We hosted the International Rare Disease Showcase, our first global event.

July 2022
We hosted our first in-person event since the COVID-19 outbreak: the Cambridge Rare Disease Showcase

July 2022
We replaced our E-learning portal and launched The Resources Hub!

September 2022
We joined REMEDi4ALL: an EU funded project to drive forward drug repurposing initiatives .

November 2022
We celebrated our 10th Birthday!

April 2023
We were awarded our second multi-year grant from The National Lottery Community Fund.

July 2023
We launched our new website!

September 2023
The Student Voice Prize 2023 was our biggest competition with over 100 entries!
