Beacon for rare diseases: ensuring that no one faces their rare journey alone
Beacon for rare diseases: ensuring that no one faces their rare journey alone
Beacon (formerly known as Findacure) is a UK-based charity that is building a united rare disease community with patient groups at its heart. We envision a world in which no one faces their rare journey alone.
Our charity upskills rare disease patient groups through trainings, guided programmes, community projects and research initiatives. We help these groups maximise their impact and deliver change for the world’s often neglected rare disease patients.
Rare diseases affect between 3.5% (263 million) and 5.9% (446 million) of the global population. Sadly, this population struggles to receive a diagnosis, treatment or meet another with the same condition. Patient groups are a lifeline for those living with a rare disease. They provide emotional support and advice for day-to-day living. Patient groups are the impetus behind new care pathways and treatments.
We are here to help those groups be the best that they can be.
What we do
Patient group training
Our in-person, virtual and on-demand trainings give patient organisations the tools and confidence they need to form grow and professionalise.
Community building
Our community projects unite patient groups, researchers, healthcare professionals and industry representatives to encourage collaborations, advancing the field of rare diseases.
Rare disease research
Our drug repurposing conference and research projects aim to bring crucial new treatments to the world's rarest patients.
Meet our patient groups
Hot off the press
We’re hiring! Join our team
Help shape the next chapter of Beacon: for rare diseases as our new Admin and Operations...
Our blog
If there’s a Will, there’s a way – good luck on your next adventure!
In August, we said goodbye to our Senior Operations Officer, Will - a huge part of the Beacon...
The rare voice
Meet Zoë! The reality of living with Dercum’s Disease
Our Digital Resources Manager, Blayne and Senior Communications Officer, Niamh recently met with...
Join our next event
Let’s get down to business
Let’s get down to business
Join us in London to learn the key principles of business planning and how it's essential for building sustainable patient groups!
The power of the patient voice in clinical research
The power of the patient voice in clinical research
Join this workshop to gain the knowledge and confidence to bring your community’s voice into the world of clinical research.
The Manchester Rare Disease Showcase 2025
The Manchester Rare Disease Showcase 2025
A national event, with a local spotlight! Be part of #RareShowcase25 in Manchester to connect, collaborate, and shape the future of rare diseases.
Let’s get down to business
Let’s get down to business
Join us in London to learn the key principles of business planning and how it's essential for building sustainable patient groups!
The power of the patient voice in clinical research
The power of the patient voice in clinical research
Join this workshop to gain the knowledge and confidence to bring your community’s voice into the world of clinical research.
The Manchester Rare Disease Showcase 2025
The Manchester Rare Disease Showcase 2025
A national event, with a local spotlight! Be part of #RareShowcase25 in Manchester to connect, collaborate, and shape the future of rare diseases.
Support our mission
At Beacon, we want to ensure that no one walks their rare journey alone. To achieve this, rare diseases must be viewed under one, united umbrella by patient groups, researchers and policymakers alike.
Our work encourages patient organisations to work together for the benefit of all rare conditions. The pharmaceutical industry and research sectors must recognise the importance of the patient voice.
Work with us to make this happen!
Discover our corporate giving and community fundraising opportunities to learn how you can bring hope to millions of people around the world. Each pound you give will help to break the isolation experienced by rare patients around the world.
How can Beacon help you?
Click on the link which best describes you. We’ll point you to our most relevant pages and additional places for support within the rare disease community.
