What is the e-learning portal?
Findacure’s e-learning portal is a central hub of information and training for rare disease advocates and patient groups. It contains educational materials, including written guides, animated videos, presentations and webinars, to help the establishment and growth of rare disease patient groups.
Who is the e-learning portal for?
The portal is aimed at rare disease advocates, patient groups and charities, though anyone with an interest in rare diseases or advocacy is welcome to sign-up. It is completely free to use, and we encourage users to contact us with suggestions for new content.
How can patient groups benefit?
Findacure knows strong patient groups are essential if progress is to happen in rare disease patient support and research. Most patient groups are led by incredibly motivated patients or parents, but these individuals often lack the background needed to efficiently manage a patient group and achieve their goals.
The portal shares ‘how to’ and best practice on a range of topics – from building your team to running patient registries – to encourage efficient and sustainable growth of patient groups. It can be accessed from anywhere at anytime, though is currently only available in English.
Scroll down for a full list of courses.
Sound good? Sign up for free by clicking ‘log in’ on the top-right corner and following the registration instructions.
How to sign-up
To sign-up, click ‘log in’ on the top-right corner. This will take you to another page with instructions for creating an account or logging in to an existing account.
How to view and enrol in courses
When you log in, you will be taken to the ‘Dashboard’. This is the homepage of the portal. In the centre of the screen, the ‘Pathways’ block displays the course categories and the courses within them.
Click on the course you would like to view. This will take you to a page that will allow you to self-enrol in that course. Click the blue ‘Enrol me’ button at the bottom of the screen. This will enable you to view and use all of the guides and materials in that course. You have to do this for each course that you would like to view.
How to use forums
Each course has a forum where you can post questions and reply to other people’s questions. The link to the forum can be found at the top of each course.
To post in the forum, click the blue ‘Add a new discussion topic’ button. On the next page, fill in the subject and the longer message, and you can add an attachment if you wish. If you want to receive email notifications when someone replies to your question, tick the ‘Discussion subscription’ box. Then click ‘Post to forum’.
How to use the glossary
As you use the portal, you’ll notice that some words are dark blue in colour. If you click these words, a definition box pops up.
To view the full glossary, select any course and navigate to the ‘Useful links’ block in the right-hand column. Select the ‘Glossary’ link in this block. There you can view an A-Z of all the key terms used in the portal.
How to give feedback
We really appreciate you sharing your honest thoughts on the portal and its courses. To provide feedback, select the course navigate to the ‘Feedback’ block in the right-hand column. Here, you can give feedback on that specific course in the ‘Course survey’ or on the portal itself in the ‘Portal-wide survey’.