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

Building a rare disease registry

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

Course

Collaborating with medical professionals

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

Course

Working with industry

Understand how to collaborate with industry successfully and how doing so can benefit your patient group.

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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

Building a rare disease registry

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

Course

Collaborating with medical professionals

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

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

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

Collaboration is key. After all, the rare community is greater than the sum of its parts! Learn how to build successful collaborations with healthcare professionals, patient organisations and industry.

Communications

The importance of language can’t be overlooked. Learn how to ensure that your communications are easy to understand, accessible and inclusive. Discover how to grow your patient group online and write content that resonates with your community.

Data

The proof is in the…data! Aid in the decision-making process by creating a patient registry for your specific rare disease. 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

Are you publishing an annual impact report to prove your value to potential funders? Demonstrating your work’s impact is vital to fundraising success. Learn how to secure funding from grants, trusts, corporates and more!

Patient group development

Not sure how to start a support group? We have a training for that! Learn how to form, grow and professionalise your patient group. Browse our courses on finding patient groups online, signposting to resources and recruiting and managing trustees when you’re ready to take that next step. 

Research and 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. Covid-19 proved the value of drug repurposing, as a treatment was brought to market quicker and cheaper to combat the pandemic. Learn more about these topics and others now.

Supporting your community

Your patient group is ensuring that no one walks their rare journey alone. Our resources help you uplift your community as it grows and faces new challenges. 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 2022 funders 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, Sophia at sophia@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!