Letter from aHUS Canada to Ontario Families regarding interim eculizumab funding
Dear Ontario aHUS families,… » Read More
Our goal is to serve as a resource for all Canadians affected by aHUS, and form a nationwide community of aHUS patients.
Dear Ontario aHUS families,… » Read More
An aHUS patient in Ontario recently received temporary funding for Soliris through the province’s Compassionate Review Policy.… » Read More
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
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
Alexion Pharma Canada has initiated and will fund a new program called the aHUS Patient Input Program. aHUS Canada has been asked to contact patients and caregivers across the country to participate in this program…. » Read More
On Thursday, July 31, aHUS UK will be hosting a webinar with Tim Goodship, Professor of Renal Medicine and aHUS researcher, Newcastle University. The webinar will focus on Professor Goodship’s views on the results of RareConnect and EURORDIS’ 2014 aHUS international survey, as well as the challenges faced by those living with aHUS…. » Read More
The results of RareConnect’s international aHUS survey were published online in May 2014. In total, the survey received 217 responses from 17 countries and was posted in six languages: English, French, Spanish, Italian, German and Dutch. aHUS Canada thanks those from the Canadian aHUS community for participating in this survey, and we are pleased to share the key findings…. » Read More
At the 51st European Renal Association–European Dialysis and Transplant Association (ERA-EDTA) Congress in Amsterdam, researchers presented new data from clinical trials supporting the long-term use of Soliris in patients living with aHUS…. » Read More
aHUS Canada’s second-annual patient and caregiver meeting was held this past April in Toronto, including a family dinner and a full agenda of informative sessions and workshops…. » Read More
Stay connected with the aHUS community in Canada! To receive info and updates from aHUS Canada, sign up here:
In addition to providing support to patients and caregivers, aHUS Canada strives to connect those affected by the condition to establish a Canadian aHUS community, build public awareness and understanding of this very rare and potentially fatal disease and advocate for the best possible care and treatment for patients.