Terms and Conditions of using The Resources Hub


The Resources Hub is a website designed and maintained by Beacon: for rare diseases (Beacon), a charity limited by guarantee in England and Wales (registered charity number 1149646).

All data collected and held by the Resources Hub is administered by Beacon as the owner and administrator of the website. The website is developed using Word Press, and the Learn Dash plugin.

By registering an account with The Resources Hub you are agreeing to the terms and conditions of use as laid out below. If you have any questions or concerns please contact resourceshub@rarebeacon.org


What is The Resources Hub?

The Resources Hub is an online learning environment designed to support the growth and development of the rare disease community, in particular to support the formation, development, and professionalisation of patient groups.

The content hosted on the Resources Hub includes e-learning courses in written and video form, video content based on live trainings and events for the rare disease community delivered by Beacon, and content that is exclusively available to those organisations who attended live training events.


Use of the Resources Hub

The Resources Hub is a free resource, with no financial cost to our users.

In order to use Resources Hub and access our training materials you will need to create an account, and log into the platform. In line with our privacy policy, Beacon will collect and store information on all registered Hub users, and their usage of the Hub. Usage of the hub will also necessitate the use of certain cookies.

By creating an account for the Resources Hub, you consent for Beacon to store data on your registration, and to collect and store data on your use of the Hub. Our privacy policy details how Beacon will use this data in more detail, but our primary aims are:

  • To improve the user experience of the Hub, and to allow you to access the most relevant information to you.
  • To up date you on updates to relevant courses, or to grant you access to event exclusive training content.
  • To understand the use of our training content, helping us to understand the needs of our audience and therefore improve our training materials for the rare disease community.
  • To understand the impact of our work, in order to meet our funding commitments, and to secure more funding to sustain the Hub for the long term.

Therefore, by creating a Resources Hub account you explicitly consent to Beacon accessing this data in order to produce anonymised reports on the use and impact of the Resources Hub.


Notifications of new content

Beacon will contact Hub users directly in order to grant you access to any new event exclusive material for which our records suggest you are eligible. We may also contact you directly to inform you of major changes or updates to courses upon which you are enrolled, or the publication of new related courses.

Eligible users are defined as those individuals who personally attended a Beacon live training event, or, in some cases, those users who belong to an organisation which attended that event.


Resources Hub content

Unless otherwise stated, the content of the Resources Hub is the intellectual property of Beacon, and any organisation or individual outside of the employ of Beacon, who helped to produce that resource. The content of the Resources Hub should not be reproduced either online or in print (except for personal use) without obtaining prior consent from Beacon.

While we encourage our users to spread the word about the Resources Hub and encourage others to make use of it, by creating a Resources Hub account you are bound by these rules.

Anyone found to have knowingly reproduced Hub content for non-personal use without Beacon’s consent may have their account either temporarily or permanently suspended.


Account life

You may choose to close your account at any time, by notifying Beacon directly.

Beacon reserves the right to close any Hub account at any time, though we will endeavour to notify users of any account closures and provide appropriate explanation.

Upon closure of your account, we will retain your data only until the next annual reporting period for our Resource Hub funding, or a period of one year – whichever comes first.