Join the global effort to raise awareness of atypical HUS!
Since 2015, the aHUS Alliance Global Action team has led an annual aHUS Awareness Day each 24 September, creating resources and highlighting key issues that matter to families living with this rare disease. In 2025, we mark the 11th year of 24 Sept campaign.
The rare disease atypical hemolytic uremic syndrome impacts every aspect of life, not just health. From the first days after diagnosis to long-term decisions, the journey is challenging — but no one walks it alone.
That’s why we’re calling on patients, families, healthcare professionals, research teams, and other supporters to join us in two key ways:
🎥 Patients & our global aHUS Family – Be part of our ‘aHUS day’ video project! This year’s theme is, “The Single Best Decision We’ve Made While Battling aHUS”
There are many insights to be learned from patients and their families around the world, and some of them center on the tough choices that can arise when faced with this life-threatening condition. Perhaps it’s the pivotal moment when a decision was made to transfer hospitals, or when the choice was made to persist despite the high cost of treatment. Whether choosing to make lifestyle changes after recovery, or any number of decisions, we invite patients and their family to participate – here’s how!
Send in 3 things: * one photo * where you are from, and * your ‘best decision’ (in 50 words or less)
A slide will be created for you, like the one below, to be included in the aHUS Awareness Day video/slideshow. Send your submissions to project lead, Jeff Schmidt at jeff@ahusallianceaction.org Our thanks to Shan Li from aHUS China for suggesting this topic as the 2025 aHUS Awareness Day theme.
📣 Friends, Healthcare Professionals, Researchers, Business Groups, and Others – Spread aHUS Info and Awareness by launching your own outreach & Stand with aHUS families worldwide!
Living with atypical HUS brings emotional, social, and medical challenges. It touches lives, changes priorities, and shapes both futures and communities.
We invite individuals and groups worldwide to participate in aHUS Awareness Day 2025, in the days and weeks leading up to September 24th as well as on the day itself. Whether online or in person, help raise awareness in your own way—through social media, local events, or conversations that bring attention to aHUS.
Wondering what you can do? Ideas include sponsoring a blood drive at work, creating an informational classroom poster presentation, organizing a ‘MedEd’ component at conferences, or creating infographics to post on social media – anything that adds visibility to aHUS Awareness Day.
Let us know how you’re raising awareness! Contact us at Info@aHUSallianceAction.org and by using our main SoMe hashtag: #aHUS24Sept
Follow our 2024 Sept Campaign on Twitter @aHUS24Sept #aHUS24Sept
Images, Press Kit & More: Visit this link! https://bit.ly/aHUSdayInfo
What is aHUS Awareness Day? In 2015 the aHUS Alliance created the 1st aHUS Awareness Day to raise visibility about the rare disease atypical hemolytic uremic syndrome (atypical HUS). Since then, the aHUS Alliance global action team has led this annual 24 September campaign with creation of informational graphics, fact sheets, and resources to serve the needs of patients and caregivers as well as clinicians and the general public.
Currently there are over 30 nations with aHUS advocacy groups worldwide, and this annual 24 Sept campaign for aHUS Awareness Day serves to both unite and amplify patient voices about issues and needs within the atypical HUS global community. We now have an ‘aHUS World Map’ on our Home Page, with patients known in 59 out of 233 listed countries and dependencies in the world.
(Why 24 Sept? Learn More about aHUS Day)
