Requesting participants for the aHUS Patient Input Program 2017

A program called the aHUS Patient Input Program was initiated in September 2014 and funded by Alexion Pharma Canada. Many aHUS patients and caregivers across Canada participated in the first three waves of interviews which were a great success. Thank you again for your help. The results of the 2014, 2015, 2016 interviews ​ have been summarized and the key findings are posted on our website: http://www.ahuscanada.org/links-resources/other-resources/… » Read More

Requesting participants for the aHUS Patient Input Program 2016 (HONORARIA PROVIDED)

A new program in Canada called the aHUS Patient Input Program was initiated in September 2014 and is funded by Alexion Pharma Canada Corp.  Many aHUS patients and caregivers across Canada participated in the first two waves of interviews which were a great success. Thank you again for your help. The results of the 2014 interviews have been summarized and the key findings were shared at our 2015 patient conference and are posted on our website: Patient Input Program   The summary slides of the 2015 interviews are now available on our website : PatientInputSurvey2015 … » Read More

2016 aHUS Global survey

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).  Members within the aHUS Alliance think meaningful information from the 2016 aHUS global poll can provide researchers, clinical trial investigators and industry a better perspective of how to reach physicians and their patients.  The survey also was designed to help patient groups better understand the needs of their members and to explore the differences in care, diagnosis and treatment access around the world…. » Read More

2016 Annual Patient Conference

The annual patient conference has been a highlight for aHUS Canada for the last three years.  It is a time when patients and caregivers can gather together to connect, share and learn more about the disease.  We were planning to have the conference in April but unfortunately due to unforeseen circumstances out of our control we are not sure if or when the conference will happen this year.  We will let you… » Read More

aHUS Patient Input Program

John Bylok would like to take this opportunity to thank everyone (patients and caregivers) for participating in the recent round of interviews for the ‘aHUS Patient Input Program’…. » Read More

Requesting participants for the aHUS Patient Input Program (HONORARIA PROVIDED)

Alexion Pharma Canada initiated and funded a new program called the aHUS Patient Input Program in September 2014.  Many aHUS patients and caregivers across Canada participated in the first wave of interviews which were a great success. Thank you again for your help. The results of these interviews have been summarized and key findings were presented at the annual aHUS Canada Patient Conference in May 2015 and will  also be made available on our website…. » Read More