A world in which no one faces their rare journey alone.
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!
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 email@example.com to discuss potential partnerships and how you can help us to deliver our mission!