The aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, launched a worldwide survey of aHUS patients and caregivers to mark Rare Disease Day 2016 (29 February). A similar effort was conducted in partnership with RareConnect in 2014, with 214 respondents from 17 nations and responding to outreach in 6 different languages. The 2014 poll included questions on common themes familiar…Continue
Added by Linda Burke on March 8, 2016 at 9:00am — No Comments
As 2015 draws to a close, it seems likely that 2016 will bring progress in complement therapeutics development toward clinical use. Since a hallmark of aHUS is chronic, uncontrolled complement activation, we’re looking forward to what happens in a rapidly moving field which seems promise advancement soon. (FMI Click Here) As with eculizumab (Soliris ®, from Alexion Pharmaceuticals), we likely will see clinical trials…Continue
Added by Linda Burke on December 27, 2015 at 9:00pm — No Comments
Concerned about getting the best care possible for aHUS patients?
If your loved one has aHUS, The Atypical HUS Foundation provides a list of volunteer physicians experienced with aHUS diagnosis, treatment options, and multi-organ issues that may cause complications for the aHUS patient. Let your doctor know about the Doc…Continue
Added by Linda Burke on March 26, 2015 at 10:30am — No Comments