The aHUS Global Video on Rare Disease Day 2017

It is Rare Disease Day 2017 .
The video that the global aHUS community has been contributing to has been released and can be seen on youtube by clicking this link
There are at least 15000 people around the world who have had an episode of aHUS and survived, many of them on dialysis because, probably, less than 10% of them have had access to eculizumab.
The 75 aHUS folk from 15 countries who have participated in the video may only represent 0.5% of the aHUS prevalent population, but they are speaking for the other 99.5%  giving them a patient voice too on Rare Disease Day.
Most of those who appear in the video have made their first steps in public patient engagement. An important step and which may lead to more involvement to help others in their country and other people like them around the world who they may never meet. Although today  they have now met the boy from India in the featured image  …. Makes you think!
Good will come together is the aHUS alliance vision
Alone we are rare together we are strong is the Rare Disease Day message.
Editor/Director of video  Jeff Smidtt of the aHUS alliance

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