2016 aHUS Awareness Day - 24 September
Information & Resources
The aHUS Alliance, an international group of atypical HUS patient organizations, has announced its 2nd annual global aHUS Awareness Day campaign will occur on 24 September 2016, dedicated to sharing information and insights into the extremely rare disease Atypical Hemolytic Uremic Syndrome and the issues facing aHUS patients. Read the PR Newswire: http://ow.ly/C5wY303G7ix . (See below for links to 2016 aHUS Awareness Day resources.)
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. Information and resources for aHUS Awareness Day will be available online at www.ahusallianceaction.org.
The theme for 2016 aHUS Awareness Day is 'Rising above aHUS', symbolized by a red balloon. There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as: the need for quick and accurate diagnosis, access to treatment and healthcare options, shared data and information among global aHUS researchers, increased physician education, and advancement in aHUS orphan drug therapies. As patients share personal stories about meeting the challenges of aHUS, the aHUS Alliance encourages medical and research teams, pharma, healthcare professionals, geneticists and policy makers to share how they or their organization’s innovations are ‘Rising above aHUS’ to improve patient outcomes.
aHUS Awareness Day –Information & Resources
2016 aHUS Awareness Day – 24 Sept Campaign
2016 Awareness Day, aHUS Alliance PR Newswire press release: http://ow.ly/lGoQ303xaXW
aHUS Day Images: http://ow.ly/Lubn303G91x
aHUS Info Center – Main http://ow.ly/gCX4303G9au
aHUS Visual Arts Project entries due by 11 Sept): http://ow.ly/Y4cq303G9lw
News & Views: aHUS Alliance BLOGS: http://ow.ly/TWqS303G9H5
2016 aHUS Global Poll OVERVIEW: http://ow.ly/gSj8303GcdH
2016 aHUS Global Poll, RESULTS & Graphs: http://ow.ly/1DA7303FoJx
RareConnect aHUS Poll Webinar: http://ow.ly/ACiN303GajE
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.
About the aHUS Alliance:
The aHUS Alliance is an umbrella organization of Atypical Hemolytic Uremic Syndrome Patient Organizations from around the world.
Their 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.
Follow the aHUS Alliance on TWITTER : @aHUSallianceAct and @aHUS24Sept
Hashtags: #aHUSday #aHUS24Sept #SHUa24Sept #aHUSaware