The Atypical HUS Foundation

School Nurse Info

Resources for School Nurses & Staff

      Atypical HUS presents very differently in patients with this rare disease.  Initially your main consideration in a student’s academic success is communication between home and school regarding the needs of aHUS patients who are attending classes at any grade level within a public or private school setting.  Communicating information about atypical HUS as a disease, explaining the student’s health status and needs, and meeting as a P.E.T. to determine needed accommodations can make a huge difference in not only optimizing success but also in providing a safe and comfortable school experience for children with atypical HUS.

Many school administrators, teachers, and school nurses send and post notices about student health and wellness.  We encourage that those messages to include district reminders about safety of immuno-comprised children to be released at least 2 times a year, and additionally during times of local outbreaks of communicable diseases in the community.  While delivery may vary (school handbooks, backpack mail, school websites, parent association Facebook pages etc), we suggest outlining practical guidelines to optimize that all need to be involved in creating a healthy learning environment.

Please check in with medical professionals for "best practice" guidelines, as well as with parents of students living with aHUS for added insight into matters such as nasal flu mist, GI illnesses, fever, sun protection, hydration, and other concerns.

(At a minimum students with atypical HUS will benefit from reduced viral/bacterial loads through simple provisions such as avoidance of shared classroom materials, but be aware that some aHUS patients will attend school with seizure issues or with central lines.  See our Individualized Health Plan or IHP template for suggestions.)


aHUS Resources - School Nurses, Counselors, Teachers, and other School Staff


 aHUS Bootcamp – an Overview of atypical HUS  (included link to detailed medical info from the NIH)  – a informational site, provided by Alexion Pharmaceuticals (makers of the drug eculizumab)

Individual Health Plan info/template – a sample IHP, useful to share with parent/caregivers

Helping Parents Understand the P.E.T. Process - the basics about I.E.Ps, 504s, and IHPs

Video – a Global Genes webinar about school issues (general rare disease patient issues)

Click here for the Global Genes Toolkit on Rare Disease Patients & School

Video – Rare Disease Challenges, social/emotional impacts of a rare disease

Grab N Go Toolkit Urgent Care Directives and Emergency Card. These forms list Physician Contact Info and Specialized Care Details, to carry or place on file. 

About the aHUS Alliance    The aHUS Alliance is a federation of more than 14 nations with aHUS patient organizations, to include The Atypical HUS Foundation in the USA.

aHUS Fact Sheets (brief) - Print & Share

aHUS Key Information and Facts - Detailed Information & Research

Other Information, Updates and Resources are available on the

aHUS Alliance website

and on Twitter at @aHUSallianceAct

As part of the Sept. 24th aHUS Awareness Day Campaign, the aHUS Alliance has created 2 fact sheets.  One is a single page (double-sided) with information about atypical HUS as a disease, and the other is a longer version with additional information and source citations to research articles and medical journals.

Looking for detailed medical information?  

aHUS Clinical Channel

NIH GeneReview


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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