Bridging Boundaries: Innovating Connecting & Reshaping Research

Join the first international drug repurposing conference, #iDR24, co-organised by REMEDi4ALL, Beacon and MeRIT on 6-7 March 2024 in Barcelona.

Key opinion leaders from both the research and patient communities, funders, regulators, and representatives from the private sector will participate to collectively advance innovative drug repurposing in Europe and beyond.

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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.
Photo of a woman holding a sign which says I love beacon because everything acrodysostosis UK has achieved is because of you
Learn more about Beacon
Learn about rare conditions
Learn 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.

Learn about our training

Community building

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

View our 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 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. There was very little advice about what was going on and why it was happening, and what was there was often conflicting. After struggling...
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Meet Wendy, Chair of the Norrie Disease Foundation

When Wendy’s son was born with Norrie disease, a rare genetic condition that causes blindness, hearing loss and developmental delays, there was no UK organisation for her to turn to for support, and very little information available. Determined to...
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Meet Amanda, Trustee and Chair of The EOS Network

Amanda has double the inspiration for establishing The EOS Network. Amanda’s two children, Samuel and Heather, were born with eosinophilic gastrointestinal disease (EGID) which makes eating incredibly painful. When Amanda’s son was diagnosed with...
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Meet Kristie, CEO of Global DARE Foundation

Defeat Adult Refsum EverywhereKristie was catapulted into the world of rare diseases in April 2019 when she was diagnosed with Refsum disease. It took the gradual loss of her peripheral vision for her to seek help from a retinal specialist in Maine...
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Meet Bhavna, CEO of Stargardt’s Connected

Bhavna’s world changed forever in September 2015 when her seven-year-old son, Ethan, was diagnosed with Stargardt’s: an inherited, degenerative retinal condition that slowly leads to sight loss. Ethan was struggling with his distance vision, so...
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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. Ring chromosome 20 syndrome is a rare...
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The rare voice

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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.

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FOP Friends

I became a “rare leader” in 2009 when my eldest son was diagnosed with the ultra-rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP). Since then, as a volunteer with zero experience, I’ve setup a patient organisation, worked with...
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Alexion, AstraZeneca Rare Disease

A rare disease diagnosis can affect anyone at any time (the majority being children) and can have a significant impact on the quality of life of patients, their families, and caregivers. Alexion, AstraZeneca Rare Disease’s innovation is driven by...
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Behçet’s UK

Without the help of Beacon I could not have achieved what I have as chair of Behçet’s UK this past 4-years. The challenge for the rare disease community is immense and can be very lonely for individuals. I’ve lost track of the number of brilliant...
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Castleman Disease Collaborative Network

Patient groups like Beacon provide critical information and resources to help the rare disease community get closer to (repurposed) treatments for devastating illnesses. As someone who is literally alive today thanks to a repurposed drug that I...
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Wolfram Syndrome UK

My name is Tracy Lynch and I’m the CEO and Co-Founder, alongside my husband, of Wolfram Syndrome UK (WSUK). I started my journey with the charity when we formed it 3 weeks after our daughter’s diagnosis in March 2010. There was no support for...
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Pitt Hopkins UK

I found out about Findacure (now Beacon) by chance back in 2014. There was going to be a workshop on Fundraising while I was in London, so I called Flóra to ask if I could come even though it was last moment. I didn’t realise that was one of the...
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MdDs

Findacure, now Beacon, was my metaphorical lighthouse in a stormy sea when I started advocating for people with Mal de Debarquement Syndrome (having MdDS embodies being in a stormy sea, when you’re not) in the UK. I was in terrible shape,...
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Metabolic Support UK

Metabolic Support UK (MSUK) are the leading organisation for Inherited Metabolic Disorders (IMDs), supporting thousands of patients worldwide through providing individual support, building patient communities, and continually advocating for and...
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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. 

I'm a 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
I'm a member of the press