The Atypical HUS Foundation

aHUS Advocacy

aHUS Global Advocacy

The Atypical HUS Foundation in the USA is one of the nations united to raise awareness for this very rare disease, as part of the international group aHUS advocates called the aHUS Alliance.  Click Here for List of Nations

aHUS Alliance:  Visit the website at  for information, research updates, advocacy, news, global patient voice.

aHUS Awareness Day is marked annually on 24 September – follow the international campaign on Twitter @aHUS24Sept  

Atypical HUS Clinical Channel  Presentations from Researchers & Clinicians from around the World: YouTube

aHUS Global Patient Voice  News & Insights into Atypical HUS:  YouTube 

aHUS Alliance – Facebook page

Twitter: @aHUSallianceAct

RareConnect – Interactive global aHUS webpage, hosted by EURORDIS

Email the aHUS Alliance global action team at: 

Atypical HUS Foundation - USA

Patient & Caregiver Advisory Panel

 The Patient and Caregiver Advisory Panel serves as dedicated vehicle for patients, parents, and caregivers to raise concerns and voice opinions about what really matters to those directly dealing with the multiple facets of an aHUS diagnosis. 

aHUS Speakers’ Committee

The aHUS Speakers’ Committee is comprised of patients, caregivers, and family members personally and directly affected by challenges associated with this rare disease diagnosis.  Well-acquainted with the broad spectrum of needs and concerns of the atypical HUS community, these speakers offer insights and support to patients and their families.  Following the outreach and awareness goals of the Foundation for Children with Atypical HUS, members of our aHUS Speakers’ Committee attend aHUS regional meetings to introduce resources and programming available for patients, families, and caregivers. 

EVENTS - Gain Information and Support

At the root of effective advocacy efforts are individuals who strive to stay informed on a variety of issues and who make the effort to network with others to gain insight and understand different viewpoints.  Visit our EVENTS tab to learn about aHUS regional meetings, webinars of interest to the aHUS community, global aHUS meetings or conferences in various nations, and other ways to gain information and support.

APPs for Patients and Caregivers

Get organized, keep on track of schedules, create and maintain a caregiver plan by using apps for your SmartPhone (Android or iPhone), iPad or other device.

When you're unable to advocate for yourself or a loved one, these apps can help you manage vital information and share caregiver info among multiple care team members.  Be an "Apps Advocate", send us your choice for Best App!

Sept 24th is aHUS Awareness Day!

Add your voice with other patients and families around the world in a global aHUS effort.  The 1st annual aHUS Awareness Day was September 24, 2015.  Learn more about the aHUS Alliance of nations, and how you can help raise awareness for aHUS patients and issues that affect them. 

24 Sept is specific to atypical HUS, but also join us in recognizing world Rare Disease Day, marked annually on the last day of February.



To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to

Membership is open to patients, family, friends, caregivers research and medical personnel.


The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.

Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.


NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.


Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
• • • • • • • • • • • •
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact with your request and details.


 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at

Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012

For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email



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