Meet Hannah our new Projects Administrator!

by | Feb 12, 2021 | Findacure team

New in-person workshop

Join us down in London this September to learn how to collaborate with industry!

Hear from patient groups and industry about what they are looking for from a successful collaboration to ensure that each party understands the other’s needs and expectations.

See you there!

Get your ticket for Drug Repurposing for Rare Diseases 2022

Join us and over 150 delegates in person for a full day of conversation and connections centered around drug repurposing and the role it can play in decreasing the cost of drug development.

Speakers have been announced, so view our programme and secure your place!

We took over the UK ariwaves!

Beacon was featured on London Live TV, Modern Mindset and more. Our campaign reached 2.1 million!

Watch two of our interviews now.

Findacure has become Beacon!

Bear with us while we make this website mobile-friendly

We understand there will be mobile navigation issues to resolve on our new site. Please bear with us as we work on them.

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

Meet Allison, co-founder of Ring 20 Research and Support UK

As a carer of a son diagnosed with ring 20 syndrome, Allison Watson increasingly felt the need for a patient group that would provide support and advice to help families and patients cope with the condition.

Meet Amanda, Trustee and Chair of The EOS Network

Amanda’s two children, Samuel and Heather, were born with eosinophilic gastrointestinal disease (EGID) which makes eating incredibly painful.

Meet Russell, Trustee of the LHON Society

Russell’s son lost his sight over a matter of weeks at the age of 24 due to LHON, a rare hereditary condition.

Meet Wendy, Chair of the Norrie Disease Foundation

Wendy’s son was born with Norrie disease, a rare genetic condition that causes blindness, hearing loss and developmental delays.

Meet Bhavna, CEO of Stargardt’s Connected

Bhavna’s world changed forever when her seven-year-old son, Ethan, was diagnosed with Stargardt’s: an inherited, condition that slowly leads to sight loss.

Upcoming events

Calendar of Events

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Drug Repurposing for Rare Diseases 2022

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Mon 10th Oct

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.

Mon 10th Oct

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.

Thu 3rd Nov

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.

Thu 3rd Nov

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.

Thu 3rd Nov

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.

Thu 3rd Nov

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!

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

Meet our patient groups

Meet Amanda, Trustee and Chair of The EOS Network

Amanda’s two children, Samuel and Heather, were born with eosinophilic gastrointestinal disease (EGID) which makes eating incredibly painful.

Meet Wendy, Chair of the Norrie Disease Foundation

Wendy’s son was born with Norrie disease, a rare genetic condition that causes blindness, hearing loss and developmental delays.

Meet Russell, Trustee of the LHON Society

Russell’s son lost his sight over a matter of weeks at the age of 24 due to LHON, a rare hereditary condition.

Meet Bhavna, CEO of Stargardt’s Connected

Bhavna’s world changed forever when her seven-year-old son, Ethan, was diagnosed with Stargardt’s: an inherited, condition that slowly leads to sight loss.

Meet Allison, co-founder of Ring 20 Research and Support UK

As a carer of a son diagnosed with ring 20 syndrome, Allison Watson increasingly felt the need for a patient group that would provide support and advice to help families and patients cope with the condition.

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,

1 event,

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Drug Repurposing for Rare Diseases 2022

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,

0 events,

0 events,

0 events,

0 events,

0 events,

1 event,

Mon 10th Oct

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.

Mon 10th Oct

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.

Thu 3rd Nov

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.

Thu 3rd Nov

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.

Thu 3rd Nov

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.

Thu 3rd Nov

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!

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

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.

Metabolic Support UK testimonial

“As we elevate our individual support, empowerment, advocacy, and insight offers, we hope to partner with Beacon on future campaigns…”

FOP Friends testimonial

Beacon’s programmes, trainings, webinars, support, student voice prize, connections, and of course RareChat sessions, have all been fantastic.

Pitt Hopkins UK testimonial

“There has been advice about how to become a charity, how to fundraise, how to work with researchers. They think of everything!”

Alexion, AstraZeneca Rare Disease testimonial

“We believe that Beacon, as an umbrella organization, helps bring the rare disease community together…”

Behçet’s UK testimonial

“Without the help of Beacon I could not have achieved what I have as chair of Behçet’s UK this past 4-years.”

Ataxia and Me testimonial

“It has been fantastic to be in this rare disease family knowing you are not alone in this rare disease community.”

MdDS Information and Help testimonial

“Beacon, was my metaphorical lighthouse in a stormy sea when I started advocating for people with Mal de Debarquement Syndrome in the UK”

Wolfram Syndrome UK testimonial

“Beacon have been there helping me to connect with other Rare Disease Charity communities…”

Castleman Disease Collaborative Network testimonial

“Patient groups like Beacon provide critical information and resources to help the rare disease community get closer to treatments for devastating illnesses.”

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.