For Awareness Day 2025, advocates to focus on ways to manage aHUS
Patients asked to share 'The Single Best Decision' they've made for care
For this year’s aHUS Awareness Day — held annually on Sept. 24 — advocates worldwide will focus on managing the rare disease, asking people with atypical hemolytic uremic syndrome (aHUS) to share the single best decision they’ve made regarding their care.
“Atypical hemolytic uremic syndrome impacts every aspect of life, not just health,” the international umbrella organization aHUS Alliance states on its 2025 aHUS Awareness Day webpage. “From the first days after diagnosis to long-term decisions, the journey is challenging — but no one walks it alone.”
Aiming to bring together patients, caregivers, advocates, and researchers, this year’s awareness day theme, proposed by Shan Li from aHUS China, is “The Single Best Decision We’ve Made While Battling aHUS.” The “global aHUS family” is encouraged to take part in the alliance’s video project, and to launch outreach efforts worldwide.
The awareness event was started in 2015 by the volunteer group, which brings together patient organizations and advocates to support individuals living with the disease, and seeks to educate others.
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,” the organization states on the event webpage.
Fact sheets, images on offer to support aHUS Awareness Day campaign
The alliance noted that people with aHUS and their families — living with a disease characterized by the destruction of red blood cells, low blood platelet counts, and acute kidney failure — are often faced with difficult choices. Decisions may include a transfer to another hospital or maintaining treatment despite the high costs, as well as lifestyle changes after recovery.
“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,” the webpage states.
The organization invites patients and their families to participate in its video project by submitting their names, where they’re from, a photo, and a narrative of up to 50 words. The essay should describe the best decision the individual has made while battling aHUS. Submissions should be emailed to project lead Jeff Schmidt at [email protected]. Slides will be created and included in the aHUS Awareness Day video/slideshow.
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.
Additional ways to support the event include creating an informational classroom poster, sponsoring a blood drive at work, organizing conference sessions, or posting infographics on social media.
aHUS Alliance also offers fact sheets, images, a press kit, and other resources for the aHUS Awareness Day campaign. Supporters may follow the Alliance’s activities on X.
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