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

Course

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.

Course

Collaborating with medical professionals

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

Free

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.

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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

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

Webinar

Maximising engagement with HCPs

Tune into this webinar to explore the practical things patient groups can do to make sure they are engaging with HCP’s in the most beneficial way.

Course

Patient group and charity collaborations

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

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Communications

Webinar

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.

Webinar

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.

Webinar

Health Literacy explained

In this webinar, we offer rare disease patient organisations a comprehensive introduction to health literacy and aim to help you understand the process involved in developing and writing 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, hosted in collaboration with Pulse Infoframe, we explore the benefits, challenges, key considerations, rules and regulations of running an international patient registry

Webinar

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

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Drug Repurposing

Free

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.

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, hosted in collaboration with Healx, we provide a comprehensive introduction to drug repurposing and aim to help you understand the process involved in repurposing drugs and what benefits this can bring.

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Fundraising

Webinar

The National Lottery Funding, opportunities during Covid-19

This webinar explores 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

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.

Webinar

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.

Webinar

How to choose the next you: where to start with succession planning

In this webinar, hear real examples of rare disease patient groups who have navigated through a leadership transition. Learn from their experience and come away with ideas on how to implement a succession plan in your own organisation.

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Research and drug development

Webinar

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

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, hosted in collaboration with Healx, we provide a comprehensive introduction to drug repurposing and aim to help you understand the process involved in repurposing drugs and what benefits this can bring.

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Supporting your community

Webinar

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.

Course

What are rare diseases?

Learn what rare diseases are and how many rare conditions there are in the world.

Course

Working from home

Learn how to establish good remote working environments, habits and how to hold efficient virtual meetings.