Connecting People, Information, Resources, and Opportunities
The aHUS Foundation encourages patients, caregivers, and medical professionals to share information and explore options/resources as we work together to gain insight into this rare and complex disease. By increasing contact opportunities with researchers and medical personnel interested in helping the atypical hemolytic uremic syndrome (aHUS) community, our stories foster a better understanding of aHUS. Sharing information, inspiration and support for one another, we seek to gather people and knowledge as we strive to improve the lives of patients and families dealing with aHUS.
Our Goals
The primary goals of the aHUS Foundation are to provide the following to all aHUS patients, their families, and caregivers:
The most current information about this rare but devastating disease.
A network in which patients and caregivers can communicate with one another, exchanging opinions and experiences.
Education and outreach as we strive to connect all those interested in aHUS issues and research in meaningful dialogue and collaborative opportunities using in-person conferences.
Create awareness of this ultra-rare disease.
Who We Are
The aHUS Foundation is a 501(c)(3) organization dedicated to helping patients, caregivers, and families who have been affected by this ultra-rare disease.
Key Milestones From The aHUS Foundation’s History
Early 2000s
Bill and Cheryl Biermann received the diagnosis for their son, Nathan, and realized that there was a lack of reliable information available for aHUS. It was an ultra-rare disease, impacting only one in a million individuals.
In 2001, they took the initiative to address this issue and formed the Foundation for Children with atypical HUS, headquartered in Missouri. They also gained IRS status as a 501(c)(3) nonprofit organization.
Their primary goal was to accumulate accurate data and information on aHUS and make it accessible to patients and caregivers. Fundraising efforts were initiated to support aHUS research.
Linda Burke, another parent who had lost her son, Hunter, to aHUS and was caring for another son, Skyler, with aHUS, joined their efforts. Linda played a significant role in creating content for the initial aHUS website, and to this day remains a prolific contributor of aHUS articles through the aHUS Alliance Action website.
2016
With more accurate information about aHUS becoming available and a growing aHUS population, the Foundation’s Board decided to shift its focus.
They began bringing patients and caregivers together through educational sessions and conferences. This provided a unique opportunity for aHUS patients and caregivers to connect, as very few had ever met someone else with the condition.
Conferences were held throughout the United States, offering a weekend of education, socializing, emotional support, and hope. All conferences were made possible through sponsorships and were provided free of charge to participants.
2017
The Foundation launched a new website, aHUS.org to further disseminate information about aHUS.
2018
The Foundation officially changed its name by the State of Missouri to “The aHUS Foundation, Inc.” This change reflected the evolving understanding of aHUS, which was no longer solely seen as a children’s disease but could affect patients of all ages.
2020
The COVID-19 pandemic put a temporary hold on the Foundation’s in-person conferences due to health and safety concerns.
2023
The Foundation resumed its conference activities with the first post-COVID conference held in Baltimore, MD.
2024
A new website launched offering higher functionality along with better personal contact.
