Beacon: for rare diseases is a UK-based charity that’s building a united rare disease community with patient groups at its heart. This year marks a decade of operation for the charity after being established as Findacure in 2012. To better reflect the charity’s values and mission, Findacure was rebranded as Beacon: for rare diseases in February 2022.
Beacon is the leading UK rare disease charity that offers training to patient groups to help more form, grow and professionalise. The team fully recognises the power and potential of these often small and voluntary groups. It’s why we work tirelessly to upskill these passionate individuals so that they can advocate for their community to the best of their ability.
Importance of Patient Groups
According to a study on rare diseases published by Wakap et al. (2020), there are 6,172 unique rare diseases. Of the 6,172 rare conditions, only 50% have a designated support group.
When a rare diagnosis is made, patients and their families are often handed a one-page Google printout of the condition and told to go home. It is patient groups who provide the emotional support after a rare diagnosis and help their members live with and manage their rare condition. Patient advocacy groups provide the understanding, support and medical information needed to make informed decisions about one’s health and treatment options. Without rare disease patient groups, rare patients and their families would be left overwhelmed, isolated and misunderstood. Patient groups are not a ‘nice to have’. They are a lifeline.
How Beacon empowers patient groups
When a patient group doesn’t exist for a rare condition, it falls to patients, parents or carers to establish one. These determined individuals have little to no experience in the healthcare or charity sector. They simply have the desire to influence change for those facing the same challenges as them.
These groups are constantly learning new terminology, methods, regulations and strategies from scratch to achieve their mission. It is why rare disease patient groups need detailed trainings to help them achieve their goals.
That’s where Beacon comes in!
Our trainings equip patient groups with the tools, confidence and connections needed to transform the rare patient experience. It is through our events and trainings that patient groups have the opportunity to connect and collaborate with others across the rare disease space. By coming together as one, unified community to share ideas, research and treatments, we are amplifying the patient voice and ensuring that no one faces their rare journey alone.
Get involved in our work: The Student Voice Prize
Despite between 263 million and 446 million people living with a rare disease worldwide, rare conditions are still some of the most difficult to spot, diagnose and treat. Rare diseases can affect multiple organs and body systems, which puts healthcare professionals at a disadvantage. No one specialist or GP gets the full picture, making it impossible to connect the dots between different symptoms that affect other areas of the body. Key connections that can lead to a prompt and correct diagnosis often go unmade, lengthening a patient’s diagnostic odyssey.
We’re saddened to learn that little to no time is dedicated to rare diseases in medical school. This lack of awareness and knowledge of rare conditions means that healthcare professionals, through no fault of their own, aren’t equipped to identify, diagnose and treat rare conditions.
We want to change this.
It’s why we’ve partnered with Medics4RareDiseases to run The Student Voice Prize international essay competition.
The Student Voice Prize challenges the doctors, nurses and scientists of tomorrow to think about rare diseases today. We pair rare disease patient groups with medical students to ensure that students gain a firsthand account of what it’s like to live with and manage a rare condition.
Over the past decade, The Student Voice prize has seen 8 overall winners, 19 runner ups and 27 published essays. We’re thrilled to say that the winning essays have been viewed over 20,837 times with 107 citations between them. Best of all, we’ve paired over 170 rare disease patient groups with medical students to share the rare experience!
The Student Voice Prize returns each Autumn with winning essays being published on Rare Disease Day (28th February annually, but 29th February in 2024).
Help us grow The Student Voice Prize by encouraging your students to enter this year’s competition! We’ve had winners from Australia, USA, Canada and more.
Visit The Student Voice Prize website to learn more and read past winners’ essay!
About Beacon: for rare diseases: https://www.rarebeacon.org/about-us/our-journey/
What are rare diseases? https://www.rarebeacon.org/rare-diseases/what-are-rare-diseases/
Why patient groups matter: https://www.rarebeacon.org/rare-diseases/why-patient-groups-matter/
Student Voice Prize: https://www.rarebeacon.org/the-student-voice-prize-2022/
Resources for clinicians and medical students: https://www.rarebeacon.org/rare-diseases/clinicians-and-medical-students/
Beacon’s 10th birthday timeline: https://www.rarebeacon.org/10th-birthday/
Rare Disease Day: https://www.rarediseaseday.org/