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
Volunteer at Beacon!
Beacon for Rare Diseases is looking for a Trusts and Foundations Volunteer, to assist our...
Our blog
Our CEO, Dr Rick Thompson reacts: The financial relationships between the pharmaceutical industry and patient organisations
In this week's blog we're highlighting our CEO, Dr Rick Thompson's response to a recent article...
The rare voice
How to look after your mental wellbeing as a rare community leader
Thursday 10th October 2024 is World Mental Health Day. To recognise this, Rareminds is sharing a...
Join our next event
Hire with impact: recruitment training for rare disease patient groups
Hire with impact: recruitment training for rare disease patient groups
Join this masterclass for a step-by-step guide on how to recruit the best people to your rare disease patient group!
Running peer support programmes
Running peer support programmes
In this 90-minute online event, we will be discussing different types of Peer Support Programmes.
Hire with impact: recruitment training for rare disease patient groups
Hire with impact: recruitment training for rare disease patient groups
Join this masterclass for a step-by-step guide on how to recruit the best people to your rare disease patient group!
Running peer support programmes
Running peer support programmes
In this 90-minute online event, we will be discussing different types of Peer Support Programmes.
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.
