Rare Disease 101: How it all began

The idea behind Rare Disease 101

When the idea of Rare Disease 101 was first mooted by Lucy McKay, my (slightly wonky) heart skipped a beat.

I had been a Trustee for M4RD for a couple of years and helped shape the website as well as other resources such as the Video Gallery. 

But here we were, talking about an interactive course on Rare Diseases. How could I not be excited?

Let me explain.

A bit about me

I am – first and foremost – the lucky owner of two rare diseases: Wyburn-Mason syndrome (an artereovenous malformation in my left eye, rendering it blind) and acromegaly (a benign tumour in the pituitary gland that produces too much growth hormone and depletes production of other hormones, such as testosterone; thankfully in remission). 

Second of all, I have a huge passion for digital learning. It is, in fact, my profession. So when the idea of an online course for medics to learn more about Rare Diseases was talked about, I knew I was in a pretty good position to make this happen.

The nuts and bolts

First and foremost I wanted to make sure that the content was engaging. This meant interactive at times and using a mixture of written content, audio and video. It had to be easy to navigate, work on all devices e.g. smartphones, tablets and laptops and provide good feedback when activities were completed.

I had been a long time fan of H5P, free to use open-source software where you can create activities, resources and games and then embed them on to a website. Their Course Presentation tool seemed to make the most sense as we were covering numerous subjects, and this meant we could split the topics up in to more manageable, bite-size learning objects.

After many months and many, many tweaks, the eight modules were built. There was some discussion as to where these would be housed. We wanted access to be easy but we also wanted to ensure that users engaged with a ‘course’, not just a collection of lessons. I suggested we used Moodle, an open-source learner management system, used the world over – and something I had been using since 2005. 

Presenting… Rare Disease 101

The end results were well worth it. We now had a course that contained Lucy’s intro video, a User Tour guiding users around the course page, the lessons themselves (including tracking and completion data), a certificate and digital badge awarded upon completion of all the lessons, information about sponsors and authors and a Discussion Forum, when further conversation could take place about rare disease.

It was a challenge, but an incredibly exciting one. And I learnt plenty along the way too. I am truly proud to have been a part of this great initiative.

Roll on RD102.

Watch Dan demonstrate RD101 in this video!

Rare Disease 101 addresses the basics of rare disease and the shared challenges that people with rare diseases face, especially when accessing healthcare. It includes information that the average medical professional may not be aware of, with many stories, examples, tools, websites, knowledge sources and images from the rare disease community.