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

Webinar

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.

Webinar

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.

Course

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!

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Browse by subject

Building connections

Communications

Data

Drug repurposing

Fundraising

Patient group development

Research and drug development

Supporting community

Building connections and collaborations

Course

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!

Webinar

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.

Course

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!

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Communications

Webinar

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.

Course

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!

Course

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!

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Data

Course

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.

Webinar

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.

Webinar

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.

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Drug Repurposing

Course

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!

Webinar

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.

Webinar

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.

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Fundraising

Webinar

The fundamentals of fundraising without a fundraiser

This webinar covers the fundamentals of fundraising for organisations that don't have a dedicated fundraiser.

Webinar

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

Course

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.

Webinar

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.

Webinar

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.

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Research and drug development

Course

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.

Webinar

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.

Webinar

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.

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Supporting your community

Webinar

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.

Course

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!

Course

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.

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