
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
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Join our next event
REMEDi4ALL Webinar Series – Introduction to Clinical Trials
REMEDi4ALL Webinar Series – Introduction to Clinical Trials
This webinar will answer some of the most common questions raised by trial participants and patients interested in research.
REMEDi4ALL Drug Repurposing Bootcamp for Academics
REMEDi4ALL Drug Repurposing Bootcamp for Academics
The REMEDi4ALL Drug Repurposing Bootcamp for Academics is designed to support senior post-doctoral researchers and early-career principal investigator...
Conquer public speaking: Unlock confidence, forge connections, and make an impact
Conquer public speaking: Unlock confidence, forge connections, and make an impact
Join our masterclass to boost your confidence in public speaking and achieve your advocacy goals!
Repeat! How to be the best leader for your community
Repeat! How to be the best leader for your community
This masterclass series is for rare disease patient group leaders who want to improve their leadership skills. It will give participants the opportuni...
#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...
REMEDi4ALL Webinar Series – Introduction to Clinical Trials
REMEDi4ALL Webinar Series – Introduction to Clinical Trials
This webinar will answer some of the most common questions raised by trial participants and patients interested in research.
REMEDi4ALL Drug Repurposing Bootcamp for Academics
REMEDi4ALL Drug Repurposing Bootcamp for Academics
The REMEDi4ALL Drug Repurposing Bootcamp for Academics is designed to support senior post-doctoral researchers and early-career principal investigator...
Conquer public speaking: Unlock confidence, forge connections, and make an impact
Conquer public speaking: Unlock confidence, forge connections, and make an impact
Join our masterclass to boost your confidence in public speaking and achieve your advocacy goals!
Repeat! How to be the best leader for your community
Repeat! How to be the best leader for your community
This masterclass series is for rare disease patient group leaders who want to improve their leadership skills. It will give participants the opportuni...
#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...
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.
