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
Boost your patient group’s productivity using AI
In this webinar, you'll explore how rare disease patient groups can use AI to boost their productivity.
Decoding diagnostics webinar series
Through a series of webinars and discussion sessions, we’ll explore the fundamental principles of genetic testing, delve into the methods and applications available, and provide practical insights on accessing, interpreting and supporting genetic diagnostic results.
Developing medical guidelines
In this course, you'll learn what medical guidelines are and why they're important for rare diseases. Discover how to develop and publish your own medical guidelines within the NICE framework now!
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
In this course, you'll learn how to foster collaborative interactions with medical professionals. Discover ways to get involved with medical education and outreach and learn how these interactions can build value for both patient groups and medical professionals alike!
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
In this course, you'll learn the steps involved in setting up a collaboration and the strategic questions which need to be asked. Explore how to effectively work together and adapt goals and priorities, so you can navigate potential issues with confidence!
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.
Getting the most out of Facebook
In this course, you'll explore if Facebook is right for your patient group. Learn how to set up a Facebook page, when you should post on Facebook, 8 top tips for getting the most out of the platform and more!
Getting the most out of Instagram
In this course, you'll learn Instagram's benefits for patient groups, the ways you can post on the platform and discover 8 top tips to help you improve your account in 1 hour or less!
Data
Building a rare disease registry
In this course, you'll learn how to use a patient registry and apply the data contained within it to make an impact. Explore the steps involved in setting up a patient registry and the important considerations for maintaining one.
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 how drug repurposing can be a more efficient and cost effective way to develop treatments for rare diseases. Learn the benefits and challenges associated with drug repurposing, the important considerations to make when setting up a drug repurposing project and how patient groups can support these projects!
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.
Evaluating the potential of drug repurposing for rare disease and Covid-19
In this webinar, you'll explore the role drug repurposing has played in identifying treatments for COVID-19 and how we can apply these same practices to rare diseases.
Fundraising
The fundamentals of fundraising without a fundraiser
This webinar covers the fundamentals of fundraising for organisations that don't have a dedicated fundraiser.
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.
Webinar series | Empowering patient groups in research funding
In this webinar we explore the rare disease research funding landscape and how patient groups can make a real impact in applications.
Patient group development
7 tips for recruiting trustees to your rare board
Learn 7 top tips for recruiting trustees to your rare board from Katherine from Getting OnBoard! Discover how to attract a diverse Board of Trustees who offer the unique skills and perspectives needed to ensure the success of your organisation.
Boost your patient group’s productivity using AI
In this webinar, you'll explore how rare disease patient groups can use AI to boost their productivity.
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
Access and reimbursement
In this course, you'll learn how patient access to new treatments is obtained and how the HTA process works. Discover where and how patient groups can contribute to the process and when patient groups should start to consider access.
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.
Decoding diagnostics webinar series
Through a series of webinars and discussion sessions, we’ll explore the fundamental principles of genetic testing, delve into the methods and applications available, and provide practical insights on accessing, interpreting and supporting genetic diagnostic results.
Supporting your community
Boost your patient group’s productivity using AI
In this webinar, you'll explore how rare disease patient groups can use AI to boost their productivity.
Developing medical guidelines
In this course, you'll learn what medical guidelines are and why they're important for rare diseases. Discover how to develop and publish your own medical guidelines within the NICE framework now!
Exploring the ethics of genetic testing
Genetic testing comes with complex ethical dilemmas, especially for those living with rare diseases. Learn a basic background of what genetic testing is and discover both the for and against arguments for it.