Visual awareness in rare diseases

by Sigurður Hólmar Jóhannesson, AHC Federation of Europe


Sigurður Hólmar Jóhannesson is the founder of Alternating Hemiplegia of Childhood (AHC) associations of Iceland, and Europe, and is a member of the RD-Connect Patient Advisory Council.


In today´s world, visual awareness is the most powerful way for anyone to get a message across weather it be to the public or to professionals. It can be extremely difficult to explain the rare disease you or your loved one is experiencing so that it is completely understood by the receiver but a short video says more than a thousand words.

If you want to grab the attention of a large number of people don´t make the video too long. In 2015 the average length watched of a single on-line video was 2 minutes 42 seconds.

Surveys indicate that 60-second video´s are the best for maximum viewers.

If also helps to send the video to online press and internet celebrities.

Eurordis has a channel that has a wide array of short films and you can send your video to the channel.

The AHC association of Iceland produced a few short films about Alternating Hemiplegia of Childhood (AHC) AHC is a rare neurological disorder that is extremely complicated and difficult to explain in words.

The short films helped people all over the world to get a correct diagnosis and to explain the disease to friends and relatives. This inspired the association to create a full documentary about AHC called Human Timebombs.

The documentary not only helps families that live with this devastating disorder but also helps to raise awareness, raise funds and is used for educational purposes for healthcare professionals and teaching hospitals in Europe and in the USA.

As it was difficult to get all the 70 interviews into the documentary a special website was created so that all the information could be stored in one place because information on rare diseases are extremely valuable to families as well as professionals.

The AHC Association of Iceland gets emails every week with stories explaining how the documentary has helped families all over the world and receiving such news is always heartwarming.

Creating a video has never been easier almost to the point that anyone can create a video. The only limit to the creativity is your imagination. Professional video´s are the best but sometimes raw material can be very powerful if the emotions can capture the audience.

Rare diseases that are difficult to explain are perfect for visual awareness.