aHUS Day 2022: Awareness Through Togetherness

The 8th international aHUS Awareness Day will occur on 24 September 2022, with this year’s theme as ‘Awareness through Togetherness’. We’re pleased to announce this year’s aHUS Day campaign and to once again offer a special project that will offer insight into the lives of atypical HUS families.

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. (Why 24 Sept? Learn More about aHUS Day)

What is aHUS ?

Atypical Hemolytic Uremic Syndrome is a life-threatening disease characterized by the systemic formation of blood clots 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. This rare type of thrombotic microangiopathy (TMA) 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. (Know aHUS, 3 languages. FMI: aHUS Resources)

aHUS Day: Invitation to Researchers, Academics & Clinical Professionals

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

Consider creating images or videos that provide information about aHUS, or atypical HUS as a TMA. People with aHUS often are treated with plasma, so we encourage your community, school, or service group to host a local blood drive. If you’re involved with programs at a teaching hospital or clinical, consider hosting a ‘Med Ed’ learning event or Grand Rounds involving aHUS as a focus. Clinical trial teams are invited to share their progress by highlighting information about drug discovery stages or study results. Let us know your plans and questions as early as possible, so we can promote your efforts by sharing photos and otherwise highlight your contribution to aHUS Awareness Day.   E: Info@ahusallianceaction.org.

Entry details: our 2022 Project for aHUS Families

Once again, the aHUS Alliance is inviting our global aHUS community to join in the “celebration” of aHUS Awareness Day by entering a slide to participate in a video project. This year’s project theme is ‘Awareness through Togetherness’ and we ask that you choose 3 qualities (one word each) that describe you since your family’s aHUS journey began. This will help us raise aHUS awareness through togetherness by sharing our journeys.

Help us raise aHUS awareness through togetherness by sharing our journeys and giving others insight into how aHUS affects us. We welcome ALL those affected by aHUS from our global community to join in this project. 

We are pleased to announce that Jeff Schmidt (USA) had volunteered to once again lead this 24 Sept campaign project. Jeff will create a slide (see sample below) that will be included in this 2022 aHUS Awareness Day slideshow video project. Submissions are due by September 17, 2022 (the earlier the better) with entry details sent to Jeff Schmidt at jeff@ahusallianceaction.org.  To participate, send in:

– Name & Where you are from

– 1 photo

– 3 qualities (one word each) that describe you since your aHUS journey began

–  Month & Year your aHUS journey began

Given the focus of our 2022 theme on Togetherness, we will be paying tribute to our ‘Fallen aHUS Fighters’ within our project this year. To remember and include families whose loved one(s) have lost their battle with atypical HUS, we invite people to honor their lives with this project, by entries on a white background and these details:

– Name & Where your Loved One is from

– 1 photo

– Your Loved One’s birth and passing dates

– Month & Year your Loved One’s aHUS journey began

Special Note:  Since the idea of the 24 Sept campaign is to raise awareness, we will start posting slides of our atypical HUS family submissions slides as the lead up to aHUS Awareness Day. This will help us build interest to raise awareness of aHUS around the world during the months of July and August as well. Entry Submission Deadline: September 17, 2022 

Sample Slide

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