The Atypical HUS Foundation

aHUS Clinical Channel

 

 

aHUS CLINICAL Channel

Physicians and researchers from the USA, France, the UK, and other nations offer information about atypical HUS.   

Click HERE  to view the aHUS CLINICAL Channel 

 

 

YouTube Channel of The Atypical HUS Foundation

Rare Disease Day videos, videos from the University of Iowa aHUS Family Conferences, Patient and Family videos, and MORE

Click HERE  to view the YouTube Channel of The Atypical HUS Foundation

 

 Click to View the 2014 aHUS Family Conference

at the University of Iowa

Videos of Presentations by aHUS Researcher and Clinicians

Limited time - but still want to Learn More?

Click the links below to access informational videos

Looking for Specific aHUS Info? 

Don’t Miss this Topic-Specific Collection of

aHUS Short Video Clips

 from the

                aHUS Family Conference              

Fall 2011 – University of Iowa

 

aHUS Video Clip Library

presenting information about

Atypical Hemolytic Uremic Syndrome

 

 

Click below to access links to dozens of topic-specific video clips.

CLICK HERE to download the Microsoft Word document

CLICK HERE to download the PDF document


Grouped by content for easy access to aHUS topics of vital interest, these downloads contain an index with topic headings.  Each topic contains direct links to a variety of topic-specific video clips, from multiple presenters. 

**To view the full presentations, see the FMI links below.**

 

Topic Headings on your Index Download include such categories as:

What is aHUS?          Diagnosing aHUS         aHUS and The Role of Complement

aHUS and Genetics              Genetic Testing           Patient Treatment Options

Presentation Comments:  Eculizumab (Soliris ®)      Plasma Therapies      MORE !

 

**FMI:  Watch the presentations in their entirety, filmed at the University of Iowa’s aHUS Family Conference, Oct. 2011.

 

View Dr. Carla Nester’s complete presentation.

View Dr. Dr. Richard Smith’s complete presentation.

View Dr. Dr. Christie Thomas complete presentation.

 

 

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

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 info@atypicalhus.org

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

WELCOME - JOIN US!

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.


NEW 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.

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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 info@atypicalhus.org 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 www.atypicalhus.org.


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 info@atypicalhus.org

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