Stay connected with news, initiatives, trends, and medical updates regarding atypical HUS with the aHUS Alliance, a global network of collaborative efforts and information specific to aHUS.
The aHUS Alliance maintains a robust social media presence featuring original content that highlights broad issues important to patients, families, researchers, and medical professionals across the rare disease arena and aHUS space.
@aHUSallianceAct aHUS Alliance
(Our Main Account for aHUS Alliance)
Providing a connecting point for aHUS advocacy efforts in more the 30 nations, the aHUS Alliance Twitter account offers a wide array of aHUS-specific information and images that showcase issues and challenges surrounding diagnosis and treatment.
The aHUS Alliance global action team is composed of an international volunteer group of atypical HUS patients and family caregivers, assuring readers an authentic aHUS patient voice centered in deeply in a wide variety of patient experiences.
@aHUS24Sept aHUS Awareness Day
Focus: the aHUS Alliance’s annual 24 Sept Campaign
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. Each year 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 join together to provide an authentic view of issues and healthcare concerns facing aHUS patients.
Hashtag samples: #aHUS24Sept #SHUa24Sept #aHUSday #aHUSaware
The aHUS Alliance offers a public Facebook page so that patients and their families have an immediate network of support as they face an aHUS diagnosis. In the role of ‘first responder’, the aHUS Alliance Facebook page is often where newly diagnosed patients and family caregivers link to their own nation’s rare disease organization or national aHUS patient group.
Our international Facebook page is often where new national aHUS advocacy groups form, with assistance from the aHUS Alliance R.O.W. initiative for the Rest of the World not served by an existing aHUS patient organization (FMI, click HERE).
Private aHUS groups do exist, which are open to families but closed to the general public. (Email us FMI: info@aHUSallianceAction.org) Many national aHUS advocacy group offer Facebook pages, which often country-specific issues and events. With our listing of aHUS advocacy organizations and outlets in countries around the world, in effect the aHUS Alliance provides a Social Media Directory with links to each one’s social media and website (if offered).
A Directory of links to 30+ National aHUS Organizations
Often social media professionals craft images shared on Twitter and Facebook for large companies and charities. Not so for aHUS Alliance social media posts. Our ‘Image Gallery’ is a small sampling of original graphics created by volunteers of the aHUS Alliance Global Action team, an international group of aHUS patients and caregivers supporting the goals of the aHUS Alliance.
Original content on our website usually has a ‘featured image’, but the aHUS Alliance offers informative graphics as well as advocacy images that provide insight and address key issues or needs. No one can relay the thoughts and emotions of aHUS families with a more authentic voice than patients and caregivers themselves.
Note: Original content from the aHUS Alliance was designed to be shared by aHUS advocates & their supporters around the world. Please credit the aHUS Alliance.
Questions? Contact Us: info@aHUSallianceAction.org.