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!
This month’s featured resources
Cambridge Rare Disease Showcase 2023
The Cambridge Rare Disease Showcase 2023 brought the rare disease community together to network and celebrate the innovative projects going on in the UK.
Help! We need to diversify our board
In this webinar, you'll gain an introduction to how to diversify your charity board. It will be a whistle-stop tour of all the things you need to do to successfully run an open recruitment process with diversity at its heart.
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!
Cambridge Rare Disease Showcase 2023
The Cambridge Rare Disease Showcase 2023 brought the rare disease community together to network and celebrate the innovative projects going on in the UK.
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.
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!
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!
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.
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!
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.
Building connections and collaborations
Learn how to build successful collaborations with healthcare professionals, patient organisations and industry.
Communications
Ensure that your communications are easy to understand, accessible and inclusive. Learn how to grow your patient group online and write content that resonates with your community.
Data
The proof is in the…data! Discover how to collect patient data to drive research with a natural history study and prove a treatment would be cost-effective to license and reimburse.
Fundraising
Demonstrating your work’s impact is vital to fundraising success. Learn how to secure funding from grants, trusts, corporates and more!
Patient group development
Learn how to form, grow and professionalise your patient group. Find patient groups online, signpost to resources and recruit trustees when you’re ready!
Research and drug development
Help drive research into your rare disease! Patient participation in medical research is crucial to creating therapies that are tailored to patients’ needs and preferences.
Supporting your community
Learn how to find patient groups online that you can partner with and signpost to, plus discover how to host in-person and virtual community events in style!
Building connections and collaborations
Learn how to build successful collaborations with healthcare professionals, patient organisations and industry.
Communications
Ensure that your communications are easy to understand, accessible and inclusive. Learn how to grow your patient group online and write content that resonates with your community.
Data
The proof is in the…data! Discover how to collect patient data to drive research with a natural history study and prove a treatment would be cost-effective to license and reimburse.
Fundraising
Demonstrating your work’s impact is vital to fundraising success. Learn how to secure funding from grants, trusts, corporates and more!
Patient group development
Learn how to form, grow and professionalise your patient group. Find patient groups online, signpost to resources and recruit trustees when you’re ready!
Research and drug development
Help drive research into your rare disease! Patient participation in medical research is crucial to creating therapies that are tailored to patients’ needs and preferences.
Supporting your community
Learn how to find patient groups online that you can partner with and signpost to, plus discover how to host in-person and virtual community events in style!
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 Beacon’s Community Mailing List. 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 2023 supporters
