The Rare Disease Day video provided an opportunity for aHUS patients around the world to voice what aHUS research was needed , and, in this unique way, brought an extensive and varied response from aHUS patients and families from several countries.
Since Rare Disease Day the alliance has been analysing and responding to the questions raised in a series of blogs on its website ( see below links to all the blogs written to date ) and shared them widely within the aHUS social media community.
These blogs do not pretend to have the answers to the questions , indeed in many cases they raised more questions , but in doing so have they helped shape them into valid research topics to go forward ,along with those raised in the 2016 Global Poll ;and the “Orphanet Article” list* , into a truly global aHUS Patients Research Agenda.
More about that to come once the two outstanding questions are addressed. In the meantime, if a viewers have not seen the previous articles here is a summary list.
Links to blogs written so far,together, in some cases, with further images extracted from the 2017 Rare Disease Day video.
Cure for aHUS was also raised by Bethany of Greenville South Carolina USA
Marciek of Poland also raised this question
Skyler asked another question about this
Rebecca of Fort Worth USA also raised this issue
Jane Kruse of Germany also asked a question about this.
as did Beren of Istanbul Turkey
* Orphanet article about aHUS research topics click HERE
Learn more, watch our aHUS Global Patient Voice – 2017 Rare Disease Day Project