The Atypical HUS Foundation

aHUS in the News

aHUS in the News

Press Releases from aHUS Patient Organizations

Source: The aHUS Alliance(Global Federation of aHUS Patient Organizations)   

Press Release Issued:  August 12, 2015

Announced:  1st international aHUS Awareness Day:  Sept 24, 2015

aHUS Awareness Day is 24 September, Raising Visibility for Rare Disease Patients with Atypical HUS


Source:  The Foundation for Children with Atypical HUS (now known as The Atypical HUS Foundation)

Press Release Issued:  September 23, 2011

Foundation for Children with Atypical HUS Recognizes First Treatment Approved for Extremely Rare Disease


Press Release, other:

Source:  Alexion Pharmaceuticals

June 17, 2012, Alexion Pharmaceuticals

"New Data Show Majority of Patients with aHUS Experienced Systemic Multi-Organ Complications Prior to Treatment"


Magazine Articles

Forbes Magazine

Matthew Herper is a vocal critic of drug pricing who labeled Alexion’s Soliris the 'World’s Most Expensive' drug in an earlier Forbes' Feb. 2010 article.  In this Sept. 24, 2012 article, this same author examines the impact of severe ultra-rare diseases, the hope brought by effective treatments, and the economics of innovation. Describing Alexion’s 20-year journey under CEO Dr. Leonard Bell's leadership, Herper's article details an insightful backstory and explainshow Alexion is working to help patients and families with other severe disorders.


Print Articles about aHUS Patients and Families

Burke family, May 11, 2012 -  Bangor Daily News, Health Supplement (New drug benefits Maine boy suffering from rare disease)


Bill and Cheryl Biermann, Feb 29, 2012 - Yahoo! Health, Rare Disease Day Story (Nathan's Journey with aHUS)


Phyllis Talbot, Feb. 29, 2012 - ABC, Rare Disease Day Story (Networking with Others Brings Shared Information and Support)




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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