Rare disease stakeholders have converging paths. Our journeys involve each other and intersect at every stage. No two journeys are the same, but the desire for a better tomorrow is universal.

At Beacon, we believe that stakeholders must work together to move the dial forward for rare disease. By bringing individual talents, expertise and knowledge to the table, the community can transform the patient experience without having to reinvent the wheel. The rare community is greater than the sum of its parts when we aid each other and play to everyone’s strengths.

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It is why we host a variety of community projects to promote cross-sector collaborations. Each project encourages participants to create new partnerships and connections to help achieve their mission. By coming together as one, unified community to share ideas, research and treatments, we are amplifying the patient voice and encouraging others to “Care about Rare”.

We are all facing the same challenges that come with incredibly complex, poorly understood and insufficiently funded rare conditions. The rare community is advocating for the same awareness, funding and recognition for rare disease. By working together, we are tackling our common challenges as one. We are collectively making impactful change for rare patients and their families around the globe.

How we are uniting communities through our work


Our community projects welcome the following rare disease stakeholders:

  • Patient groups
  • Patients and their families
  • Life-sciences industry
  • Policymakers
  • Researchers
  • Healthcare professionals
  • Students
  • And more!

Each project encourages awareness, participation and communication amongst the rare disease community. Learn more about our specific community projects below and attend an upcoming Beacon event!

The Rare Disease Showcase


Our Rare Disease Showcase is an event series that celebrates the innovative rare disease projects taking place across the UK and wider world. Our Showcase series introduces rare disease stakeholders to each other and invites them to share their experiences, work, research and expertise with the wider community. By sharing and combining the rare community’s skills, we are creating an unstoppable movement that brings real change to those living with rare disease.

Drug Repurposing for Rare Diseases Conference


Our Drug Repurposing for Rare Diseases Conference highlights the role that drug repurposing plays in lowering the cost and time associated with traditional drug development. Drug Repurposing for Rare Diseases illustrates the benefit and value of drug repurposing. We highlight the best examples of rare repurposing in the field to encourage patient groups to get involved in research. Drug repurposing projects are not only led by patient groups, but also by industry, researchers and clinicians. Our Drug Repurposing for Rare Diseases Conference sparks cross-sector conversation and collaboration to ensure that new, repurposed treatments reach patients faster.

The Student Voice Prize (SVP)


The Student Voice Prize is an annual, international essay competition that raises the profile of rare disease within the medical field, particularly with medical students, nurses and scientists who may have never come across rare diseases in their training. Although rare diseases affect approximately 350 million people worldwide, little time is dedicated to them in medical school. It is why The Student Voice Prize challenges the doctors, nurses and scientists of tomorrow to think about rare disease today. After all, with a lifetime risk of 1 in 17 in the UK, it’s not rare to come across them!

We host The Student Voice Prize in collaboration with Medics4RareDiseases. The winner of the competition is published in the Orphanet Journal of Rare Diseases, amongst many other prizes.

Rarely Heard Podcast


We have joined forces with Same but Different to bring the community a new rare disease podcast. “Rarely Heard” delves into what it is really like to live with a rare disease. We bring a variety of personal perspectives and challenges to light, which have rarely been heard due to fear of judgement, embarrassment or simply society’s noise. Come with us as we explore the unspoken rare truths around mental health, dating, university and work.

How to get involved in our rare community projects

If you’d like to get involved in our community projects, visit the corresponding project’s website above or visit our events page.

If you’re looking for sponsorship opportunities, email our Head of Operations, Mary Rose at maryrosebeacon.org.uk, to learn more and discuss potential sponsorship packages.

Subscribe to our Community Mailing List to be amongst the first to hear about our upcoming rare community projects.

If you’d like to learn more about our upcoming community projects or have ideas about future events, please email our Projects Team at projects@rarebeacon.org.

We look forward to working with you soon!