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

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.

Webinar

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!

Course

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!

« » page 1 / 3

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

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

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

Learn how collaborations between patient groups can help your patients and help to grow the rare community.

« » page 1 / 2

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.

Webinar

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.

Webinar

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

Course

Building a rare disease registry

Understand what patient registries are, the steps involved in creating them and the impact they can have.

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.

« » page 1 / 4

Drug Repurposing

Course

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.

Conference

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. 

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.

« » page 1 / 4

Fundraising

Workshop

Formalising your patient group as a charity: Understanding charity registration

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

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.

Workshop

Formalising your patient group as a charity: Understanding charity registration

Webinar

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.

« » page 1 / 3

Research and drug development

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.

Conference

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. 

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.

« » page 1 / 6

Supporting your community

Webinar

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.

Webinar

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. 

Course

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.

« » page 1 / 2