Beacon: for rare diseases

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.