Supporters to Raise Global ‘Awareness Through Togetherness’ on Sept. 24

Awareness Day seeks to call attention to aHUS community and research

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by Mary Chapman |

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“Awareness through Togetherness” is the theme for supporters around the world to mark this year’s aHUS Awareness Day, on Sept. 24.

The 8th annual event seeks to call attention to atypical hemolytic uremic syndrome (aHUS) and the needs of the community, as well as to spotlight advancements in research and treatments. The rare disease is thought to affect less than 140,000 people globally.

Awareness Day is organized by the aHUS Alliance, an international umbrella group comprising patient organizations and rare disorder advocates. The group works with affiliates to support researchers and those living with aHUS, and to foster disease awareness.

“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,” the organization stated on an event webpage.

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Supporters are encouraged to create images or videos that seek to educate others about the disease which causes blood clots to form in small blood vessels, resulting in damage to the kidneys and other internal organs. Because patients diagnosed with aHUS are sometimes treated with plasma — the liquid part of blood — Awareness Day participants are also asked to consider hosting a local blood drive.

For those involved with programs at a teaching hospital or clinic, ideas include hosting an aHUS-focused educational event. Meanwhile, aHUS clinical trial teams are encouraged to share study results or treatment discovery progress.

“Individuals, families, medical teams, service groups, researchers, and businesses around the world are all welcome to actively participate in raising awareness for atypical HUS,” the aHUS Alliance stated.

Awareness Day will feature a video project that provides insights into the lives of aHUS families. The project, which will include photo entries from aHUS families globally, will result in a video slideshow that will be posted on the alliance’s website. This year’s project will pay tribute to the “fallen aHUS Fighters” who have died from aHUS.

“Help us raise aHUS awareness through togetherness by sharing our journeys and giving others insight into how aHUS affects us,” the alliance stated. “We welcome all those affected by aHUS from our global community to join in this project.”

Those who wish to participate in the initiative should submit their entries by Sept. 17 by sending an email to patient advocate Jeff Schmidt at [email protected].