Browse by subject
Whether you want to learn more about fundraising and communications or research and drug development, we have the resources for you.
Simply browse by subject to find free online resources in your area of interest and get started! You don’t have to complete the course in one sitting. You can come and go as you please, and view how far you have gotten with the convenient progress bar.
Don’t know where to begin? Explore our new and updated e-learning modules!
The Resources Hub is managed and maintained by the rare disease charity, Beacon for Rare Diseases.
New and updated resources

Developing your rare disease patient group from the bottom up
In this webinar series, you'll explore how rare disease patient groups can attract and retain the right people to ensure the success and longevity of their patient organisation. Discover how to attract and manage volunteers, employ staff and begin succession planning.
Browse by subject
Building connections
Communications
Data
Drug repurposing
Fundraising
Patient group development
Research and drug development
Supporting community
Building connections and collaborations

Collaborating with medical professionals
Learn how you can work with HCP's to build sustainable collaborations and help your patient community.

Maximising engagement with HCPs
In this webinar, you'll explore the practical things that patient groups (no matter what size or capacity) can do to engage with HCP’s in the most beneficial way. Learn what other groups are doing to effectively and sustainably engage with medical professionals.
Communications

Ensuring inclusive communication around genetics
In this webinar, you'll explore the role genetics play as a tool to accessing diagnoses and understanding rare conditions. Learn the barriers to understanding genetic diseases and discussing their inheritance.
Data

Building a rare disease registry
Understand what patient registries are, the steps involved in creating them and the impact they can have.
Drug Repurposing

Drug Repurposing
In this course, you'll explore the benefits and challenges associated with drug repurposing, the important considerations to make when setting up a drug repurposing project and how to coordinate it effectively.
Fundraising
Patient group development

Developing your rare disease patient group from the bottom up
In this webinar series, you'll explore how rare disease patient groups can attract and retain the right people to ensure the success and longevity of their patient organisation. Discover how to attract and manage volunteers, employ staff and begin succession planning.
Research and drug development

Building your patient group data to drive research
In this webinar, you'll explore how patient groups can utilise technologies and opportunities to put patient datasets at the forefront of cutting edge research.
Supporting your community

Growing your patient community by identifying patients and groups online
In this webinar, you'll discover opportunities to signpost to your organisation online using rare disease databases, online forums and membership lists.

Navigating the Cost of Living Crisis
In this webinar series, you'll explore how rare disease patient groups can navigate the challenges associated with the Cost of Living Crisis and build resilience into their strategy and operations. We discuss setting funding priorities and managing risk.Â

Supporting Mental Health
In this course, you'll gain a background on mental health in the rare community. Learn the importance of protecting people's mental health and how to set up policies to do so. Explore how to support those experiencing poor mental health, grief and loss using examples of approaches used in the rare community.