The aHUS Alliance, an international group of atypical HUS patient organizations and global advocates, announces its 3rd annual worldwide aHUS Awareness Day campaign will occur on 24 September 2017 which falls on a Sunday this year. Dedicated to sharing information and insights into the extremely rare disease Atypical Hemolytic Uremic Syndrome, the aHUS Alliance invites people and organizations around the world to participate in raising aHUS awareness.
Atypical Hemolytic Uremic Syndrome is a life-threatening 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 affects both adults and children and is often associated with an uncontrolled activation of the complement system, part of the body’s protective immune system.
The world’s first aHUS Awareness Day was held in 2015 on 24 September. During that same week 60 years ago the term Haemolytic Uraemic Syndrome first appeared in medical literature. HUS was given its name by Conrad von Gasser, when he and his research team described in an article for a Swiss clinical publication the illness they had been studying which caused blood clotting, anemia and kidney failure. The aHUS Alliance invites all stakeholders in aHUS community to join together and aid visibility to highlight information, insights, and issues specific to aHUS.
The aHUS Alliance encourages every nation, all individuals affected by aHUS, and corporate or medical teams to create aHUS Awareness Day projects, events, resources, or outreach campaigns leading up to September 24. Whether the choice is to focus on global aHUS issues, key national concerns, insights into patient life, research efforts, supportive messages, or innovative programs, stakeholders in the aHUS arena will join together to provide an authentic view of issues and healthcare concerns facing aHUS patients today.
About the aHUS Alliance
The aHUS Alliance is an umbrella organization of patient organizations and global advocates from around the world. Our coordinated efforts center on the common goals of supporting aHUS patients and their families, discussing and addressing common concerns, and improving access to drugs and therapies that can save lives and improve outcomes.
aHUS Alliance Vision Statement: “The aHUS alliance, through the collaboration of its affiliates will promote global awareness of aHUS, will work with international aHUS researchers and, by supporting newly emerging national aHUS patient groups, will bring relief and support to those affected by aHUS to save , and improve the quality of, more lives.” (Adopted 2015)
Follow the aHUS Alliance and 24 September campaign on TWITTER : @aHUSallianceAct and @aHUS24Sept Hashtags: #aHUS24Sept #SHUa24Sept #aHUSday
Information & Resources for aHUS Awareness Day 2017 will appear at: www.ahusallianceaction.org
aHUS Alliance – Press Kit – http://ow.ly/SKyN309mx9o