Speakers announced for The Cambridge Rare Disease Showcase!

See who’ll be speaking at The Cambridge Rare Disease Showcase on the 14th June!

Join us in-person to network, connect and reflect on the advancements made in rare disease by patient groups, academia, researchers and industry.

Claim your ticket to the #RareShowcase23!

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Register for Session 4: Managing expectations of advanced therapies

Register for Session 4 of our webinar series to benefit from an interactive session where you can ask your questions to an expert advanced therapies panel!

Join us on 7th June to explore how to know if advanced therapies are the right fit for your rare condition and group, what needs to be considered before getting involved and the common challenges faced throughout the development pathway.

Please note: Session 4 must be signed up for separately using its specific Eventbrite page!

Sign up now

We're hiring for a new Projects Officer on our science team!

This is the perfect entry to junior-level role for a scientific graduate or individual with professional experience in the life sciences industry!

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It's our 10th birthday!

Go down memory lane with us to see what we’ve achieved over the last decade.

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Register for FREE on our brand-new Resources Hub!

The Resources Hub is a 100% free e-learning platform that is full of exclusive content that guides patient groups through every stage of their rare disease journey.

Discover what you could achieve on The Hub today!

Sign up

We've joined the REMEDi4ALL drug repurposing project!

REMEDi4ALL is a new flagship EU-funded research initiative to drive the repurposing of medicines across the UK and Europe. We’re one of 24 UK and European partners working to repurpose medicines to treat some of the world’s rarest and most neglected conditions.

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Findacure has become Beacon

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Findacure has become Beacon!

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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.

Learn more about Beacon

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.

Learn more about rare conditions
Learn more about patient groups

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.

Learn more about Beacon

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.

Learn more about rare conditions
Learn more about patient groups

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.

Learn about our training
Learn about our rare community projects
Learn about rare research

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.

Learn about our training

Rare Community

Our community projects unite patient groups, researchers, healthcare professionals and industry representatives to encourage collaborations, advancing the field of rare diseases.

Learn about our rare community projects

Rare disease research

Our drug repurposing conference and research projects aim to bring crucial new treatments to the world’s rarest patients.

Learn about rare research

Meet our patient groups

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 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 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 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.

Upcoming events

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Wed 14th Jun

The Cambridge Rare Disease Showcase

The Cambridge Rare Disease Showcase is back! Join us at The Clayton Hotel on 14th June for an evening of conversation, connections and canapes!

Wed 14th Jun

The Cambridge Rare Disease Showcase

The Cambridge Rare Disease Showcase is back! Join us at The Clayton Hotel on 14th June for an evening of conversation, connections and canapes!

View Calendar

What’s happening at Beacon?

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 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 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 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.

Upcoming events

Calendar of Events

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T Tue

W Wed

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Wed 14th Jun

The Cambridge Rare Disease Showcase

The Cambridge Rare Disease Showcase is back! Join us at The Clayton Hotel on 14th June for an evening of conversation, connections and canapes!

Wed 14th Jun

The Cambridge Rare Disease Showcase

The Cambridge Rare Disease Showcase is back! Join us at The Clayton Hotel on 14th June for an evening of conversation, connections and canapes!

View Calendar

What’s happening at Beacon?

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.

I’m a rare disease patient group representative
I’m a person affected by a rare condition
I’m a researcher
I’m a clinician or medical student
I’m a pharmaceutical representative

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.

I’m a rare disease patient group representative
I’m a researcher
I’m a pharmaceutical representative
I’m a person affected by a rare condition
I’m a clinician or medical student

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.

Learn more about corporate giving
How can I help?

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.”

Metabolic Support UK testimonial

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

Alexion, AstraZeneca Rare Disease testimonial

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

FOP Friends testimonial

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

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.”

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!”

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.

Learn more about corporate giving
How can I help?