Supporters Gear Up for aHUS Awareness Day on Sept 24
From participating in an organ donor registration drive to sharing a community video project, supporters globally are poised to mark the 7th annual aHUS Awareness Day on Sept. 24.
The event seeks to heighten visibility around atypical hemolytic uremic syndrome (aHUS), highlight the latest research, and underscore the needs of patients and their families. This year’s theme is United in Advocacy.
Awareness Day is being coordinated by the aHUS Alliance Global Action, an international umbrella group of patient organizations and rare-disease advocates. The alliance collaborates with affiliates to support patients and researchers and to promote awareness of the disease estimated to affect less than 140,000 individuals globally.
“Since that first international ‘aHUS Day,’ the aHUS Alliance Global Action Team has continued to lead this annual 24 September awareness campaign by raising issues, promoting efforts, and creating resources for aHUS families and the general public,” the alliance announced.
“The 2021 aHUS Awareness Day theme of being ‘United in Advocacy’ features the concept that it’s through shared information, ideas, efforts, and conversations that we can work together to improve options for better patient care and brighter futures for aHUS patients and their families,” the organization added.
As part of the observance, aHUS Alliance will present new data from its global survey that was completed this year about patients’ diagnostic journey. Because it is so rare, and some of its symptoms mimic those of other diseases, aHUS is often difficult to diagnose.
The 45-question survey, conducted from last November to this January, sought to improve understanding of what patients experienced on their journey to diagnosis. Such information can help advance research and lead to earlier and better treatments.
To support Awareness Day, the aHUS Alliance is asking people to organize, promote, or participate in an organ donor registration drive or gather friends and family to donate blood in memory or in honor of a loved one with aHUS. Plasma therapies are often used to treat aHUS globally, so blood product availability is critical.
Again this year, Awareness Day will feature a video project that will include photo entries from aHUS families from around the world. Photos will be used to create a video slideshow that will be presented on the aHUS Alliance website.
More ways to participate in aHUS Awareness Day include reaching out to a fellow patient or caregiver, creating artwork to express the meaning of “United in Advocacy,” and writing an article on the impact and challenges posed by aHUS. The narrative can be up to 500 words in length and will be published on the aHUS Alliance website.
Other ideas include writing a story about what it means to be an aHUS advocate, and sharing photos of banners, posters, and events that are meant to support someone locally who is living with the disease. Supporters are also encouraged to contact media outlets about possible stories, and patients are asked to share coping skills via an inspirational image, an aHUS Alliance article, or a YouTube video.