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

aHUS awareness day is here!!

Today marks the first International aHUS Awareness Day. The aHUS Alliance, a confederation of 14 nations with atypical HUS patient organizations, is dedicating this day to sharing information and insights into an extremely rare, life-threatening, disease known as Atypical Hemolytic Uremic Syndrome.

Atypical Hemolytic Uremic Syndrome is an ultra-rare disease characterized by the systemic formation of blood clots (TMAs) throughout the body, potentially causing damage to the kidneys and other organs, with complications that may include serious or fatal events including stroke, cardiac  issues, and kidney failure. It is often associated with an uncontrolled activation of the complement system, part of the body’s protective immune system. We estimate there are less than 100 patients in Canada.

The theme for aHUS Awareness Day is ‘Communication’. There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as: the need for quick and accurate diagnosis and healthcare options, shared data and information among aHUS researchers worldwide, and increased physician education about atypical HUS. Linda Burke, an American representative with the aHUS Alliance, says that, “Issues facing rare disease patients affect not only the individual with the disease, but also include the social, financial and societal impact among family members, the workplace, the healthcare system, and many other areas.”

At the core of patient treatment, caregiver concerns, medical team coordination, and disease research is communication of information and issues. Len Woodward, a UK representative of the aHUS Alliance, said that “Our goal for international aHUS Awareness Day was to provide families affected by aHUS and patient organizations to have an opportunity to join together and to shine a spotlight on aHUS around the world.  We encourage medical and research teams, pharma, healthcare professionals, geneticists and policy makers to communicate their own message about aHUS issues and their team’s commitment to improved patient outcomes.”

A problem faced by aHUS patients is the lack of access to proper treatment. More than two years have passed since Health Canada approved eculizumab for the treatment of aHUS and yet eculizumab is not accessible to aHUS patients in Canada except in Quebec and to a small percentage of Ontario patients through an interim funding agreement. 

Earlier this year, the Ministry of Health and Long-term Care in Ontario announced that it would provide interim funding for eculizumab for aHUS patients who meet “defined clinical criteria.” Vice-Chair of aHUS Canada, Michael Eygenraam, noted that, “While a long-term funding solution is our primary goal in Ontario, we are disappointed that similar progress has not been made in other provinces across Canada.”… » Read More