On the 28th of this month it will be the tenth annual Rare Disease Day.
Rare Disease Day began in 2007 as a EURORDIS initiative to raise rare disease awareness, and now it is truly a global event
aHUS patient organisations and individuals throughout the world have participated in previous Rare Disease Day activities whether these events were solely for aHUS, or with other rare disease groups . ( To get information of any 2017 activities near your, visit the Rare Disease Day website by clicking here)
Each annual Rare Disease Day has a theme , for 2017 it is research.
Last year for Rare Disease Day the aHUS alliance collaborated on a Global aHUS Survey and the responses from 233 patients from 23 countries from all five continents, provided considerable insight about our rare disease . Those insights continue to drive what the alliance is doing e.g. seeking to access best aHUS treatment in the developing world.
For Rare Disease Day 2017, the aHUS alliance is embarking on another global aHUS collaboration.
Led by the alliance’s Jeff Smidtt, a Rare Disease Day video is to be produced by collecting questions about aHUS from aHUS people around the world. After all answering questions is all that research is about.
The featured images illustrate how globally inclusive the video will be, and gives example of the questions that are being asked; there are many more.
There is still time for anyone affected by a aHUS to add to this “global aHUS patient engagement ” event which will be widely distributed throughout the “aHUS World” and beyond to raise awareness.
#aHUSrockslives so together be #aHUSstrong and be a part of the Rare Disease Day 2017 legacy.
Just e mail Jeff at firstname.lastname@example.org with your name location/country a photo and your question and he will set up your screen and include you in the video.
Alone we are rare , together we are strong
Good will come together