September 24, 2019 will mark the 5th annual aHUS Awareness Day, created by the aHUS Alliance to raise awareness for the rare disease atypical HUS. People affected by aHUS face many challenges and greatly benefit from support of friends, family, and their community which led to the… » Read More
The annual aHUS Awareness Day will be coming up on September 24, 2018. The aHUS Alliance is putting together another video slide show and this year’s video will give you a chance to thank / honor your favorite caregiver or advocate. aHUS is a devastating disease and having support dealing with it is crucial. Maybe it’s your husband, wife, mom, dad, brother, or sister? Or maybe a doctor or nurse, friend or co-worker? And maybe you have more than one. Someone or something that helps you or your loved one fight aHUS…. » Read More
The third International aHUS Awareness Day is September 24, 2017. The aHUS Alliance, an international group of atypical HUS patient organizations, founded this day three years ago to bring awareness to the issues aHUS patients are facing and sharing information and insights into Atypical Hemolytic Uremic Syndrome. Atypical Hemolytic Uremic Syndrome is an ultra-rare, life-threatening, disease characterized by the systemic formation of blood clots (TMAs)… » Read More
Here is an important update to the Ontario Exceptional Access Program (EAP) funding criteria of eculizumab (Soliris) for aHUS patients.… » Read More
Rare Disease Day is right around the corner. The world will join together on February 28, 2017 to raise awareness for rare diseases. The theme for the upcoming Rare Disease Day is “Research”…. » Read More
The second International aHUS Awareness Day is September 24, 2016. The aHUS Alliance, an international group of atypical HUS patient organizations, is dedicating this day to the issues aHUS patients are facing and sharing information and insights into Atypical Hemolytic Uremic Syndrome. Read the PR Newswire: http://ow.ly/C5wY303G7ix .… » Read More
The quest to get public funding of the drug eculizumab (Soliris) for aHUS patients in Canada (the only pharmaceutical treatment for them) has been ongoing since July 2013. After two years of advocating, the Ontario Ministry of Health and Long Term Care decided in February 2015 to provide interim funding of this drug for aHUS patients who meet defined criteria. In August of 2015, aHUS Canada was pleased to hear that the pCPA (pan-Canadian Pharmaceutical Alliance) finally began negotiations with eculizumab’s manufacturer, Alexion, and were hopeful that permanent funding criteria would be created for all of Canada…. » Read More
Wishing everyone a very Happy New Year. Let’s hope that 2016 will be the year that all aHUS patients will be granted publicly funded access to eculizumab. We will continue to work hard to make a difference in the lives of aHUS patients. Thanks to everyone for all the support over the past year. Alone we are rare, together we are strong!!