Activities are set internationally to observe the Sept. 24 aHUS Awareness Day, which aims to raise visibility around the disease, highlight the latest research, and provide insight into patients’ needs.
The fifth annual awareness day is coordinated by aHUS Alliance, an international umbrella group of patient organizations and rare-disease advocates. aHUS Alliance works with affiliates to promote disease awareness and support patients and scientists.
Because those living with atypical hemolytic uremic syndrome (aHUS) face many challenges and rely upon assistance from friends, family, and community, the theme for this year’s campaign is “Family and Community Support.”
Estimated to affect some 140,000 people of all ages around the world, the extremely rare progressive disorder causes abnormal blood clots to form in the kidneys’ small blood vessels. These clots can cause serious problems if they restrict or block blood flow.
”For people living with aHUS, ‘family’ isn’t just a domestic arrangement of people related by bloodline or legal ties, nor is ‘community’ narrowly defined as a group of people in a particular location,” aHUS Alliance’s website states. “The aHUS community shares common concerns and is linked through joint needs and actions into a social family that shares experiences and support.”
The organization is seeking Awareness Day participation from individuals, families, healthcare professionals, researchers, and businesses around the world.
One of its suggestions is to organize, promote, or participate in a local blood donation or organ donor registration drive. The availability of blood products is critical to saving lives. And, because of kidney function issues, many patients require dialysis and a kidney transplant. In many countries, plasma therapies are frequently used to treat aHUS patients. One way to participate is to gather friends and family and donate blood in memory or in honor of a patient.
So that others can better understand the disease, the organization is requesting written stories from patients about how the disease affects them or their families, or about how they’ve overcome obstacles. The organization also welcomes videos from patients telling of a fellow patient’s support, or how they themselves have helped others. In addition, people with aHUS are invited to share what the organization calls “life hacks” — personal videos or inspirational images about conquering everyday aHUS challenges.
Supporters are also asked to take photos of banners, posters, and events that support a local patient, and send the photos to the organization. They also are encouraged to contact local media to suggest Awareness Day story ideas. Here are a media kit, aHUS fact sheets, and Awareness Day images.
In addition, patients and their families are invited to contribute to the aHUS Family Photo Album, which will be posted online Sept. 24. Submissions are due by Sept. 17. Go here for more information. Awareness Day participants can also create artwork to express this year’s theme and share it on social media or with the organization. Ideas include drawings, T-shirts, edible art, and fabric arts.