The Manchester Rare Disease Showcase

Our Rare Disease Showcase brings the community from across the UK and beyond together for an full day of connection, collaboration, and celebration.

This year’s programme will spotlight the incredible innovations, research, and lived experiences shaping rare disease progress on a national scale – with an additional local focus on the inspiring work taking place in the North West.

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Careers at Beacon

Join us at Beacon, where everyday presents the opportunity to contribute meaningfully to our mission.

As a small charity dedicated to ensuring that no one walks their rare journey alone, we offer a unique and dynamic work environment that challenges you to grow professionally and personally.

Check our our vacancies and start your own rare journey today!

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Let's get down to business

This hands-on workshop will take the fear out of business planning.

There’s no jargon, just practical guidance to help you shape a plan that works for you. With expert speakers who understand the realities of working in rare disease, you’ll come away with tools, tips and ideas to help you use your resources wisely and build for the long term.

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The power of the patient voice in clinical research

This three-part, online workshop is designed to give rare disease patient group leaders the knowledge and confidence to engage with clinical research and make their voices heard.

Across three two-hour interactive sessions, we’ll explore the unique challenges of rare disease trials, share practical solutions, and highlight where patient groups can add value.

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Register on The Resources Hub

The Resources Hub (formally known as the E-learning Portal) is a 100% free and accessible e-learning platform!

Whether you’re an individual, a small group of volunteers or an established charity, our free support group training can help you to get started.

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Make a donation

You support makes a monumental difference. Help us ensure that no one faces their rare journey alone!

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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 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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Meet Mel, Founder of Cure DHDDS!

Mel Dixon is the Founder of the charity Cure DHDDS. Her rare disease journey began when two of her three children were diagnosed with an ultra rare DHDDS gene variant in November 2022.The DHDDS gene variant is ultra rare, newly discovered and...
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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 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 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 Sailaja, from Prurigo Nodularis!

Sailaja’s journey began when she developed a debilitating and distressing, rare neuro-immunological condition called Prurigo Nodularis almost twenty years ago. Sailaja faced a diagnosis odyssey that lasted for nine years, learning the hard way that...
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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 Lee, Co-Founder of NCBRS Worldwide Foundation

Lee Reavy's rare disease journey began in 2006 when his son, Callum, was born. Right from the start, Lee and his wife noticed something wasn't quite right - Callum was small and had distinctive facial features. Later the next year, after a visit 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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Hot off the press

Our blog

We said Goodbye to Eve!

We said Goodbye to Eve!

30 Oct, 2025

In September, we said goodbye to our Scientific Projects Manger, Eve. Eve will be very missed at...

The rare voice

Join our next event

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

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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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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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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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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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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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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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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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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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