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
Beacon’s role in The LifeArc Translational Centres for Rare Disease
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Our blog
#Resolution4Rare advances: Rare diseases poised for global recognition
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The rare voice
Prader-Willi Syndrome: My experience as a carer, a geneticist and a medical student
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Join our next event
Strategic planning and sustainability
Strategic planning and sustainability
In this 90-minute online session, we invite you to join an interactive discussion on strategic planning for patient groups.
#iDR25 Medicines reimagined: unlocking the potential of existing drugs for patient benefit
#iDR25 Medicines reimagined: unlocking the potential of existing drugs for patient benefit
Join Beacon and REMEDi4ALL at iDR25 – the international drug repurposing conference – to unlock the full potential of medicines by driving innovat...
Building capacity with AI
Building capacity with AI
Join this masterclass to explore how AI can can open up new possibilities to strengthen your fundraising and communications efforts.
The Cambridge Rare Disease Showcase
The Cambridge Rare Disease Showcase
This annual event celebrates the innovative work and powerful stories emerging from the rare disease community – uniting patient groups, researchers...
Networking with confidence masterclass
Networking with confidence masterclass
Join this networking masterclass to learn how to build meaningful connections, foster collaborations and achieve your advocacy goals.
Strategic planning and sustainability
Strategic planning and sustainability
In this 90-minute online session, we invite you to join an interactive discussion on strategic planning for patient groups.
#iDR25 Medicines reimagined: unlocking the potential of existing drugs for patient benefit
#iDR25 Medicines reimagined: unlocking the potential of existing drugs for patient benefit
Join Beacon and REMEDi4ALL at iDR25 – the international drug repurposing conference – to unlock the full potential of medicines by driving innovat...
Building capacity with AI
Building capacity with AI
Join this masterclass to explore how AI can can open up new possibilities to strengthen your fundraising and communications efforts.
The Cambridge Rare Disease Showcase
The Cambridge Rare Disease Showcase
This annual event celebrates the innovative work and powerful stories emerging from the rare disease community – uniting patient groups, researchers...
Networking with confidence masterclass
Networking with confidence masterclass
Join this networking masterclass to learn how to build meaningful connections, foster collaborations and achieve your advocacy goals.
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.
