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

Rare Disease Day 2015

Rare Disease Day 2015 is coming up! For more information about the day, events worldwide or how you can get involved, please click HERE…. » Read More

Australian government agrees to fund Soliris for aHUS

aHUS Canada is pleased to share some great news from Australia today – Alexion and the Australian government have come to an agreement that will see Soliris provided to aHUS patients. Unfortunately, according to the aHUS Patient Support Group of Australia (aPSGA) and local reports, it still appears as though the funding conditions/criteria are somewhat limited, in that the government will determine how long a patient should stay on therapy. The aPSGA and the manufacturer argue that physicians should be the ones to decide if a patient stays on or goes off therapy. Still, the aPSGA has still reacted favourably to the agreement, which will allow Australians with aHUS to begin treatment and potentially save lives right away…. » Read More

Announcement by Australian government regarding Soliris funding

On September 18, the Australian government announced that it will fund Soliris through its Highly Specialised Drugs Program. According to the government, the funding commitment will be $63 million over four years. Please see their press release here. While the government has set aside the funds, they are still awaiting confirmation from the manufacturer regarding the listing and terms…. » Read More