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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.
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.
Rare Community
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.
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.
Rare Community
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
Upcoming events
Calendar of Events
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RareChat | Patient group experiences of collaborating with industry
RareChat | Patient group experiences of collaborating with industry
Next RareChat announced: Experiences of collaborating with industry! Collaboration between patient groups and industry is critical to be able to drive research into your rare condition, develop treatments and gather […]
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Webinar two | Growing your team: employing staff to drive your patient group towards its goals
Webinar two | Growing your team: employing staff to drive your patient group towards its goals
Developing your rare disease patient group from the bottom up - you can now sign up for the second webinar in the series!This series will look at how rare disease […]
0 events,
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RareChat | Patient group experiences of collaborating with industry
Next RareChat announced: Experiences of collaborating with industry! Collaboration between patient groups and industry is critical to be able to drive research into your rare condition, develop treatments and gather […]
Webinar two | Growing your team: employing staff to drive your patient group towards its goals
Developing your rare disease patient group from the bottom up - you can now sign up for the second webinar in the series!This series will look at how rare disease […]
What’s happening at Beacon?
FOP Friends trustee receives a British Empire Medal in Queen’s Jubilee Honours List
FOP Friends trustee, Helen Bedford-Gay, was named to the Queen’s Jubilee Honours List. Helen was one of 304 recipients of a British Empire Medal (BEM)! Learn more now.
Read our latest blog
May we have a little throwback?
It may not be a Thursday but we think it’s time to revisit some of the exciting things our Senior Projects Officer, Philippa got up to in May when she attended the AKU Society’s 12th Annual Scientific Conference in Brussels and also the Podcast show in London!
Meet our patient groups
Upcoming events
Calendar of Events
M Mon
T Tue
W Wed
T Thu
F Fri
S Sat
S Sun
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
1 event,
RareChat | Patient group experiences of collaborating with industry
RareChat | Patient group experiences of collaborating with industry
Next RareChat announced: Experiences of collaborating with industry! Collaboration between patient groups and industry is critical to be able to drive research into your rare condition, develop treatments and gather […]
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
1 event,
Webinar two | Growing your team: employing staff to drive your patient group towards its goals
Webinar two | Growing your team: employing staff to drive your patient group towards its goals
Developing your rare disease patient group from the bottom up - you can now sign up for the second webinar in the series!This series will look at how rare disease […]
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
0 events,
RareChat | Patient group experiences of collaborating with industry
Next RareChat announced: Experiences of collaborating with industry! Collaboration between patient groups and industry is critical to be able to drive research into your rare condition, develop treatments and gather […]
Webinar two | Growing your team: employing staff to drive your patient group towards its goals
Developing your rare disease patient group from the bottom up - you can now sign up for the second webinar in the series!This series will look at how rare disease […]
What’s happening at Beacon?
FOP Friends trustee receives a British Empire Medal in Queen’s Jubilee Honours List
FOP Friends trustee, Helen Bedford-Gay, was named to the Queen’s Jubilee Honours List. Helen was one of 304 recipients of a British Empire Medal (BEM)! Learn more now.
Read our latest blog
May we have a little throwback?
It may not be a Thursday but we think it’s time to revisit some of the exciting things our Senior Projects Officer, Philippa got up to in May when she attended the AKU Society’s 12th Annual Scientific Conference in Brussels and also the Podcast show in London!
How Beacon can 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.
How Beacon can 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.
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.
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.