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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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Drug Repurposing for Rare Diseases 2022
Drug Repurposing for Rare Diseases 2022
Our annual conference, Drug Repurposing for Rare Diseases, highlights the role that drug repurposing can play in lowering the cost and accelerating the development of rare disease treatments. Our conference sparks cross-sector conversation, uniting the expertise of diverse groups to inspire meaningful, patient-centred drug repurposing research for rare diseases.
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1 event,
Online Workshop: Building rare resilience
During this workshop, we will hear practical tools and strategies to look after your own wellbeing as a rare leader, manage expectations, avoid burnout and deal with the distress of others.
Drug Repurposing for Rare Diseases 2022
Our annual conference, Drug Repurposing for Rare Diseases, highlights the role that drug repurposing can play in lowering the cost and accelerating the development of rare disease treatments. Our conference sparks cross-sector conversation, uniting the expertise of diverse groups to inspire meaningful, patient-centred drug repurposing research for rare diseases.
Drug Repurposing for Rare Diseases 2022
Our annual conference, Drug Repurposing for Rare Diseases, highlights the role that drug repurposing can play in lowering the cost and accelerating the development of rare disease treatments. Our conference sparks cross-sector conversation, uniting the expertise of diverse groups to inspire meaningful, patient-centred drug repurposing research for rare diseases.
Online Workshop: Building rare resilience
During this workshop, we will hear practical tools and strategies to look after your own wellbeing as a rare leader, manage expectations, avoid burnout and deal with the distress of others.
Online Workshop: Building rare resilience
During this workshop, we will hear practical tools and strategies to look after your own wellbeing as a rare leader, manage expectations, avoid burnout and deal with the distress of others.
Online Workshop: Building rare resilience
During this workshop, we will hear practical tools and strategies to look after your own wellbeing as a rare leader, manage expectations, avoid burnout and deal with the distress of others.
Online Workshop: Building rare resilience
During this workshop, we will hear practical tools and strategies to look after your own wellbeing as a rare leader, manage expectations, avoid burnout and deal with the distress of others.
What’s happening at Beacon?
New ONLINE workshop with Genetic Alliance UK and Rareminds!
We have joined forces with Genetic Alliance UK and Rareminds to bring you a 4-part online workshop that’s focused on building rare resilience. Register now to gain the tools and strategies needed to look after their own wellbeing, manage expectations, avoid burnout and deal with the distress of others.
Read our latest blog
Twin Anemia Polycythemia Sequence – A Rare Disease Affecting Twins
Stephanie Ernst, Founder of TAPS Support, shares how her twin girls were diagnosed with twin to twin transfusion syndrome (TTTS) and Twin Anemia Polycythemia Sequence (TAPS) – a rare disease affecting twins. Read her rare journey now.
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,
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0 events,
0 events,
0 events,
0 events,
0 events,
1 event,
Drug Repurposing for Rare Diseases 2022
Drug Repurposing for Rare Diseases 2022
Our annual conference, Drug Repurposing for Rare Diseases, highlights the role that drug repurposing can play in lowering the cost and accelerating the development of rare disease treatments. Our conference sparks cross-sector conversation, uniting the expertise of diverse groups to inspire meaningful, patient-centred drug repurposing research for rare diseases.
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0 events,
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0 events,
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0 events,
0 events,
1 event,
Online Workshop: Building rare resilience
During this workshop, we will hear practical tools and strategies to look after your own wellbeing as a rare leader, manage expectations, avoid burnout and deal with the distress of others.
Drug Repurposing for Rare Diseases 2022
Our annual conference, Drug Repurposing for Rare Diseases, highlights the role that drug repurposing can play in lowering the cost and accelerating the development of rare disease treatments. Our conference sparks cross-sector conversation, uniting the expertise of diverse groups to inspire meaningful, patient-centred drug repurposing research for rare diseases.
Drug Repurposing for Rare Diseases 2022
Our annual conference, Drug Repurposing for Rare Diseases, highlights the role that drug repurposing can play in lowering the cost and accelerating the development of rare disease treatments. Our conference sparks cross-sector conversation, uniting the expertise of diverse groups to inspire meaningful, patient-centred drug repurposing research for rare diseases.
Online Workshop: Building rare resilience
During this workshop, we will hear practical tools and strategies to look after your own wellbeing as a rare leader, manage expectations, avoid burnout and deal with the distress of others.
Online Workshop: Building rare resilience
During this workshop, we will hear practical tools and strategies to look after your own wellbeing as a rare leader, manage expectations, avoid burnout and deal with the distress of others.
Online Workshop: Building rare resilience
During this workshop, we will hear practical tools and strategies to look after your own wellbeing as a rare leader, manage expectations, avoid burnout and deal with the distress of others.
Online Workshop: Building rare resilience
During this workshop, we will hear practical tools and strategies to look after your own wellbeing as a rare leader, manage expectations, avoid burnout and deal with the distress of others.
What’s happening at Beacon?
New ONLINE workshop with Genetic Alliance UK and Rareminds!
We have joined forces with Genetic Alliance UK and Rareminds to bring you a 4-part online workshop that’s focused on building rare resilience. Register now to gain the tools and strategies needed to look after their own wellbeing, manage expectations, avoid burnout and deal with the distress of others.
Read our latest blog
Twin Anemia Polycythemia Sequence – A Rare Disease Affecting Twins
Stephanie Ernst, Founder of TAPS Support, shares how her twin girls were diagnosed with twin to twin transfusion syndrome (TTTS) and Twin Anemia Polycythemia Sequence (TAPS) – a rare disease affecting twins. Read her rare journey now.
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.