Welcome to The Resources Hub! 

 

The Resources Hub is a 100% free e-learning platform that is full of exclusive content that guides patient groups through every stage of their rare disease journey.

Discover what you could achieve today through the Hub’s training and development courses!

What is the Resources Hub?

The Resources Hub (formally known as the E-learning Portal) is a 100% free and accessible e-learning platform for rare disease:

  • Patient groups
  • Patients
  • Advocates

The Hub brings together resources from across Beacon’s training programme to provide patient groups with one, central place to further their learning on topics of interest. The Hub’s catalogue of courses, guides and videos ensures that you can learn in a way that best suits you. The Resources Hub is there to guide you through every stage of your rare journey, so you can reach your advocacy goals.

Whether you’re an individual, a small group of volunteers or an established charity, our free support group training can help you to get started.

Browse our catalogue now to learn how to manage the direction of your organisation and clarify your group’s long-term strategy!

Who is Beacon?

The Resources Hub is managed and maintained by the rare disease charity, Beacon for Rare Diseases.

Beacon (formerly known as Findacure) is a UK-based non-profit organisation that is building a united rare disease community with patient groups at its heart. We envision a world in which no one faces their rare journey alone.

Our charity upskills rare disease patient groups through in-person, virtual and on-demand trainings, as well as guided programmes, community projects and research initiatives. We help patient groups maximise their power, potential and impact, so they can bring about lasting change for those living with some of the world’s rarest conditions.

Learn more about Beacon now!

Beacon for Rare Diseases logo

This month’s featured resources

Course

Supporting the nutritional management of your rare community

In this course, you'll learn different options for disseminating nutritional management information to your community to help them adhere to a specialised diet. View examples from patient groups who have developed and distributed nutritional information about their rare condition!

Course

What patient groups need to know about Early Access Programmes (EAPs)

In this course, you'll gain the comprehensive information needed to make informed decisions about participating in and supporting early access programmes (EAPs). Enroll now to explore EAPs, especially if your group has a treatment on the horizon or one that's currently available and wish to access it.

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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Conference

#iDR24 International Drug Repurposing Conference

This spring we teamed up with REMEDi4ALL and MeRIT to deliver the first international drug repurposing conference, #iDR24 on 6th – 7th March 2024 in Barcelona. Watch the recordings now!

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!

Course

Harnessing the power of social media

Watch this top tip video guide to navigate social media platforms with confidence! Learn more about the different platforms and discover top tips for creating engaging content that yields meaningful results on them.

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Our Hub’s impact and purpose

The Resources Hub (formally the E-learning Portal) was established in April 2015 by Beacon for Rare Diseases. It was clear from listening to patient groups that remote learning is invaluable, as patient group leaders often have to navigate caring responsibilities, disability, health challenges, family life, employment, location and other roles.

Since 2015, the E-learning Portal has seen strong growth, expanding from 94 users to over 290 in 2021. The Resources Hub builds on this growth by putting the needs of patient groups at the heart of every new course, guide and video. Our materials provide learning on the topics that rare disease patient groups have identified as crucial to their training and development.

We believe that by combining resources from across Beacon’s training programme, The Hub is empowering patient groups leaders and advocates to be better informed and confident in their capabilities.

Quotation Mark

When I first started, I had no experience in the charity world and very little knowledge. Beacon’s training has helped me immensely in building my confidence and taking our charity forward. Thank you!

Quotation Mark

What subjects do our training resources cover?

The Resources Hub’s training and courses delve into many different subjects. Here’s a taste of what you can explore. 

Don’t miss the release of new trainings and resources

To be amongst the first to hear about new resources added to The Hub and upcoming patient group trainings with Beacon, subscribe to The Beacon Bulletin. You can update your subscription preferences at any time.

If you’d like to learn more about Beacon’s patient group trainings or have ideas for future training opportunities, email our Projects Team at projects@rarebeacon.org.

Thank you to the supporters of The Resources Hub

We would like to thank the following organisations for supporting The Resources Hub. We are incredibly grateful for your time, generosity and support.

If you’d like to discuss funding, collaboration or pro-bono opportunities on the Resources Hub, email Beacon’s Fundraising Officer, Faith at faith@rarebeacon.org – she’d be happy to hear from you, as we’re always looking for partners to support the growth of our patient group training programme and The Hub!

The Resources Hub is funded as part of Beacon’s Empowerment Programme.

Our 2024 supporters

Alan Boswell Group
The National Lottery Community Fund
Illumina
Costello Medical
Amicus Therapeutics
Orchard therapeutics
Pharming