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.

Photo of Nick Sireau
Photo of Tony Hall

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!

Photo of Tony Hall

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