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Our goal is to serve as a resource for all Canadians affected by aHUS, and form a nationwide community of aHUS patients.
The PMPRB (Patented Medicine Prices Review Board) has announced that they have further delayed the enforcement of the amended “Patented Medicines Regulations” to July 1, 2021. This is good news for all Canadians since the regulations which were revised to lower drug prices, have instead created barriers to new medicines for rare diseases.
The regulations as newly drafted and subsequently revised are not in line with what most stake-holders (including the vast majority of patient groups) wanted to see because the concerns raised during consultations have been largely ignored.
The announcement of the delay can be viewed here:
https://www.canada.ca/en/patented-medicine-prices-review/services/consultations/draft-guidelines.html… » Read More
To keep our patient community informed, we are sharing the December 12, 2020 news that AstraZeneca and Alexion Pharmaceuticals, Inc. (Alexion) have entered into a definitive agreement for AstraZeneca to acquire Alexion. The boards of directors of both companies have unanimously approved the acquisition. Subject to receipt of regulatory clearances and approval by shareholders of both companies, the acquisition is expected to close in Q3 2021…… » Read More
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
Here is an important update to the Ontario Exceptional Access Program (EAP) funding criteria of eculizumab (Soliris) for aHUS patients.… » Read More
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
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