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.
Getting started with medicines repurposing
In this educational series, learn how patient groups, academics and researchers can get started with medicines repurposing. Watch all three webinar recordings to learn how to take your drug repurposing idea to the next level!
Health Utilities and How to Measure Them
In this course, you'll learn why it's important to measure health. You'll explore what a utility value is and how it's used to measure health, plus weigh the pros and cons of using different methods to obtain utility values and more!
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.
Patient group and charity collaborations
Learn how collaborations between patient groups can help your patients and help to grow the rare community.
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.
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.
Health Literacy explained
In this webinar, you'll gain a comprehensive introduction to health literacy and how to develop and write information with health literacy in mind.
Data
Building a rare disease registry
Understand what patient registries are, the steps involved in creating them and the impact they can have.
Building an international patient registry
In this webinar, you'll explore the benefits, challenges, key considerations, rules and regulations of running an international rare disease patient registry.
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.
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.
Drug Repurposing Conference 2019
On 27th February 2019, we held our sixth annual Drug Repurposing for Rare Diseases Conference, welcoming over 100 people to the event.Â
Drug Repurposing explained
In this webinar, you'll gain a comprehensive introduction to drug repurposing, its benefits and an overview of what's involved in repurposing drugs.
Fundraising
Formalising your patient group as a charity: Understanding charity registration
The National Lottery Funding, opportunities during Covid-19
In this webinar, you'll explore the new COVID-19 response funding schemes offered by the National Lottery Awards for All scheme and National Lottery Community Fund.
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.
Formalising your patient group as a charity: Understanding charity registration
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.
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.
Drug Repurposing Conference 2019
On 27th February 2019, we held our sixth annual Drug Repurposing for Rare Diseases Conference, welcoming over 100 people to the event.Â
Drug Repurposing explained
In this webinar, you'll gain a comprehensive introduction to drug repurposing, its benefits and an overview of what's involved in repurposing drugs.
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.