The Resources Hub is managed and maintained by the rare disease charity, Beacon for Rare Diseases.

Beacon (formerly known as Findacure) is a UK-based non-profit organisation that is building a united rare disease community with patient groups at its heart. We envision a world in which no one faces their rare journey alone.

Our charity upskills rare disease patient groups through in-person, virtual and on-demand trainings, as well as guided programmes, community projects and research initiatives. We help patient groups maximise their power, potential and impact, so they can bring about lasting change for those living with some of the world’s rarest conditions.

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The Resources Hub (formally the E-learning Portal) was established in April 2015 by Beacon for Rare Diseases. It was clear from listening to patient groups that remote learning is invaluable, as patient group leaders often have to navigate caring responsibilities, disability, health challenges, family life, employment, location and other roles.

Since 2015, the E-learning Portal has seen strong growth, expanding from 94 users to over 290 in 2021. The Resources Hub builds on this growth by putting the needs of patient groups at the heart of every new course, guide and video. Our materials provide learning on the topics that rare disease patient groups have identified as crucial to their training and development.

We believe that by combining resources from across Beacon’s training programme, The Hub is empowering patient groups leaders and advocates to be better informed and confident in their capabilities.

To be amongst the first to hear about new resources added to The Hub and upcoming patient group trainings with Beacon, subscribe to The Beacon Bulletin. You can update your subscription preferences at any time.

If you’d like to learn more about Beacon’s patient group trainings or have ideas for future training opportunities, email our Projects Team at projects@rarebeacon.org.