The Atypical HUS Foundation


Physicians wishing to explore the use of eculizumab (Soliris®) therapy for patients with atypical HUS are advised to directly contact Alexion Pharmaceuticals, makers of Soliris ® for information related to the only drug approved by the FDA for treatment of atypical hemolytic uremic syndrome. 

FMI, call 1-888-SOLIRIS.


Alexion Pharmaceuticals provides two sites with detailed information, and the information below is courtesy of Alexion's corporate and informational websites.

To learn more about aHUS, visit To learn more about treatment with Soliris, visit


     Alexion offers OneSource™, a program that provides education, assistance with access to Soliris, and treatment support for patients and their caregivers.  Each patient who enrolls in OneSource will receive one-to-one support from an Alexion Nurse Case Manager who helps coordinate care and assist with obtaining reimbursement. All Nurse Case Managers are registered nurses who have extensive experience caring for patients and working in the health insurance industry

To learn more, call 1-888-SOLIRIS or visit

NOTE:  The Foundation for Chidlren with Atypical HUS is an non-profit organization that does not promote any treatment, drug, therapy, or devices.  We act as an independent voice for aHUS familes, serving as a networking hub that connects information, people, organizations, support, resources, and rare disease advocacy efforts aimed at improving patient outcomes.  Commentary related to any treatment, drug, therapy, or devices is not a real or implied endorsement by our Foundation.




For patients and their families, this website offers a Soliris® Forum.

Looking for a sample of insurance guidelines for eculizumab regarding usage in aHUS or TTP?  Visit Anthem's website for one company's medical policy regarding this drug.  For specific information regarding detailed insurance coverage and medical issues related to Soliris, call 1-888-SOLIRIS.





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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