aHUS Awareness Day & Rare Disease Day
Information and Resources
aHUS AWARENESS DAY
24 September – an annual day to highlight the issues,
challenges, and remarkable individuals within the aHUS community
The aHUS Alliance created the 1st aHUS Awareness Day in 2015 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 creating fact sheets, graphics, and resources to serve the needs of patients and caregivers as well as clinicians and the general public.
Our website offers original content created by an international volunteer team of aHUS patient advocates and family caregivers. Our articles that express global patient voices and collaborative efforts with aHUS research teams and advocacy groups.
Why 24 September?
September 24, 2015 was selected as the inaugural date for the first aHUS Awareness Day because during this same week 60 years ago the term Haemolytic Uraemic Syndrome first appeared in medical literature. HUS was given its name by Conrad von Gasser, when he and his research team described in an article for a Swiss clinical publication the illness they had been studying which caused blood clotting, anemia and kidney failure. Read more HERE and HERE.
What is atypical HUS?
aHUS Awareness Day on Twitter @aHUS24Sept
Articles & Projects
2021: Current aHUS Day Campaign
United in Advocacy – 2021 Call to Action
Last Year’s Campaign
Past aHUS Day Campaigns
aHUS Awareness Day Videos – Created by Patients, Families, and Supporters
Featuring videos about aHUS Day, a special playlist of the aHUS Alliance YouTube channel which focuses on aHUS patient experiences and viewpoints: Atypical HUS Patient Voices
Looking for aHUS Awareness Day items?
From the group that created aHUS Day in 2015, and in response to requests from supporters,
we do offer 24 September items on Zazzle.
Click the image to see the Official aHUS Day storefront
RARE DISEASE DAY
Rare Disease Day was founded in 2008 by EURORDIS to raise awareness for the people affected by rare medical conditions and for the issues and challenges faced by patients and their families. Policy makers and healthcare systems put their focus on diseases and disorders that affect large patient populations, so rare disease advocacy groups like the aHUS Alliance often rely on families to share their experiences. Through the expertise and volunteer efforts of clinicians and research teams, national patient groups have ability to provide insight into drug access, diagnosis, policy, and other key aspects within their country.
Atypical HUS is one of an estimated 7000+ rare diseases, individually uncommon but collectively affecting perhaps an estimated 1 in 12 people. Rare diseases are defined differently around the world, so Rare Disease Day facts vary. While exact numbers of people diagnosed with aHUS are unknown, it is estimated at 2 people per million and thus sometimes noted as an ultra-rare disease.
As an umbrella group of aHUS advocates and patient organizations in over 30 nations, the aHUS Alliance annually participates in world Rare Disease Day with articles, graphics, and projects with a specific focus on atypical HUS.
As an umbrella group of aHUS advocates and patient organizations in over 30 nations, the aHUS Alliance participates in world Rare Disease Day with articles, graphics, and projects with a specific focus on atypical HUS.
aHUS Alliance – Rare Disease Day CAMPAIGNS
RD Day- aHUS Video Playlist – Created by Patients, Families, and Supporters
RD Day- aHUS Video Playlist – Created by aHUS Patient Groups