Who we are
Beacon is a UK-based non-profit organisation that is building a united rare disease community with patient groups at its heart.
Our patient group trainings help these often small and voluntary organisations to form, grow, and professionalise. It is through our events and trainings that patient groups have the opportunity to connect and collaborate with others across the rare disease space.
At Beacon, we believe that no one should face their rare journey alone.
Our vision
A world in which no one faces their rare journey alone.
Our mission
To build a united rare disease community with patient groups at its heart.
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.
Whether these groups are creating patient leaflets to help others live with the condition or are speaking in front of government policymakers to bring about sustainable change, they are uplifting the rare patients and families they support.
A rare journey may be long, hard and complex, but know that Beacon will help guide you through every turn along the way.
By working in partnership with patient organisations and other rare stakeholders, we are building a united community that is transforming the rare patient experience. We create opportunities for rare disease support groups to make connections with others in the space to advance care, research and treatment as one, united community.
At Beacon, we are with you, for you and breaking rare disease isolation alongside you. We are in this together. You are never alone!
How are we building a united rare disease community with patient groups at its heart?
Although rare diseases are individually unique, the challenges that they pose are quite common. Medical understanding, knowledge and research of rare diseases are limited. This lack of understanding sadly results in delayed diagnoses, misdiagnoses and years of fighting to be heard for patients and their families.
At Beacon, we recognise these common threads and listen to the rare patient experience. We help all those who engage with us to embark on their personal rare journey with hope, confidence and guidance.
Our free patient group trainings provide the direction needed to form, grow and professionalise a rare disease support group. Our trainings encourage patient organisations to build connections with other advocacy groups and rare stakeholders to promote collaboration. It is through collaboration that patient groups learn and grow from each other.
We deliver projects that connect rare disease stakeholders from around the world to unite and build our rare community. Our team prides itself on delivering high-quality, professional events that make everyone feel welcome and heard.
Our events highlight excellence within the rare disease field and prompt discussion, reflection and action. The patient voice is always at the forefront of our work. We consistently promote the role patient groups play in research and corporate collaborations. We also aggressively pursue the tremendous potential drug repurposing offers to millions of untreated rare disease patients.
We have seen the positive impact rare disease support groups have on their community. Through upskilling these groups, we are ushering in change and breaking isolation.
We have achieved all this by:
Supporting patient groups to form, grow and professionalise.
Empowering patient groups to provide emotional and practical support to their communities.
Supporting patient groups to form, grow and professionalise.
Empowering patient groups to provide emotional and practical support to their communities.
Facilitating connections and collaborations to help grow and strengthen the rare disease community.
Helping patient groups to find a place at the heart of research so that they can ensure better outcomes and improve access.
Facilitating connections and collaborations to help grow and strengthen the rare disease community.
Helping patient groups to find a place at the heart of research so that they can ensure better outcomes and improve access.
Our memberships
At Beacon, no one faces their rare journey alone. That goes for us as a rare disease charity, too! We are delighted to be members of the following organisations, which make it possible to foster collaborations across the rare disease and life sciences sectors.
We would love to add to this list, so please get in touch with our Chief Operating Officer, Mary Rose Roberts, at maryrose@rarebeacon.org to discuss potential partnerships and how you can help us to deliver our mission!
