Beacon: for Rare Diseases

Who we are

Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart.

Our vision: a world in which no one faces their rare disease journey alone.

Our team prides itself on delivering high-quality, professional projects that make everyone feel welcome and heard.

Our events highlight excellence within the rare disease field and prompt discussion, reflection and action. Our patient group trainings help small and voluntary organisations to form, grow and professionalise. Together, we provide opportunities to connect and collaborate with others across the rare disease space.

By working in partnership with patient organisations and other stakeholders, we are breaking the isolation felt by those living with a rare condition, uniting all rare diseases in to a single unified force.

About rare diseases

The European Union and United Kingdom define a disease as rare if it affects fewer than 1 in 2,000 people, but there is no universal definition. 

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.

Our culture and values

Living with a rare disease can be an extremely isolating experience; both for patients and their families. Rare patients often fall victim to misdiagnosis, delayed treatment, poor care coordination and a lack of support. It is all too common for those diagnosed with a rare condition to be given a printout from Google, and be told to go home and deal with it.

Rare disease support groups are key to breaking this isolation. These advocacy groups help patients and families live with and manage their rare condition. Patient groups not only support the mental and physical health of their community, but also act as the community’s voice.

These groups fight tirelessly to gain better access to treatments for their community. They guide families through the process of transitioning from childhood to adult care. They advocate for greater awareness of rare diseases amongst healthcare professionals.