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

Access and reimbursement
Understand how patient access to new treatments is obtained, including why access matters and when access considerations should start for patient groups.
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.
Communications

Ensuring inclusive communication around genetics
In this webinar we highlight the role of genetics as a tool to accessing diagnoses and understanding of rare conditions, and a barrier to understanding and discussing these diseases and their inheritance.

Growing your patient community by identifying patients and groups online
In this webinar we explore opportunities for signposting to your organisation online. The webinar covers rare disease databases, online forums and membership lists, before looking at how you can strategically search for more opportunities which are specific to your rare disease.
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
This course explores the benefits and challenges associated with drug repurposing, and the important considerations when setting up and coordinating a drug repurposing project.
Patient group development

Employing staff to drive your patient group towards its goals
In this webinar, learn how to know when your group is ready for paid staff, what you need in place before you can hire someone and how to attract the right people for your organisation.

Growing your patient community by identifying patients and groups online
In this webinar we explore opportunities for signposting to your organisation online. The webinar covers rare disease databases, online forums and membership lists, before looking at how you can strategically search for more opportunities which are specific to your rare disease.
Research and drug development

Building your patient group data to drive research
In this webinar, hosted in collaboration with Aparito and Pulse Infoframe, we explore how patient groups can utilize 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 we explore opportunities for signposting to your organisation online. The webinar covers rare disease databases, online forums and membership lists, before looking at how you can strategically search for more opportunities which are specific to your rare disease.