aHUS awareness Day September 24, 2018

The third 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

aHUS Awareness Day: September 24, 2017

 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

Rare Disease Day 2017

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

aHUS Awareness Day: September 24, 2016!

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 Pan Canadian Pharmaceutical Alliance (pCPA) has ended negotiations with Alexion.

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

HAPPY NEW YEAR

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!!

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