The Atypical HUS Foundation

MORL - Genetic Testing for aHUS

Important NOTE:

USA law protects Americans from discrimination in health insurance and employment with the 

Genetic Information Nondiscrimination Act (GINA) of 2008.

NIH – National Human Genome Research Institute:  an overview and resources regarding the Genetic Information Nondiscrimination Act of 2008.

Click HERE to View our Summary of aHUS Genetic Screening Labs in America

 

 

MORL provides dependable, high quality genetic testing and interpretative services within an academic setting.

 

Molecular Otolaryngology and Renal Research Laboratories (MORL) are recognized nationally and internationally for their expertise in the area of complement-mediated renal diseases and as leaders in genetic testing for deaf and hard-of-hearing persons.

 

Associated with the Carver College of Medicine at the University of Iowa, our Clinical Diagnostics Division provides functional testing of the complement cascade and genetic screening of all genes implicated in two rare kidney diseases:  atypical Hemolytic Uremic Syndrome (aHUS) and C3 glomerulopathy (C3G).  C3G includes Dense Deposit Disease (DDD, previously known as Membranoproliferative Glomerulonephritis Type 2 or MPGNII) and C3 glomerulonephritis (C3GN).  The Clinical Diagnostic Division also offers OtoSCOPE®, the first truly comprehensive genetic test for hereditary hearing loss, including Usher syndrome and Pendred syndrome

 

. Final reports are issued after a multidisciplinary meeting to discuss results in the context of any clinical data that has been provided.

 

Visit the MORL website at http://www.healthcare.uiowa.edu/labs/morl/index.htm

 

NEW!  aHUS Biomarker – Longitudinal Study

announced Aug. 2015 by MORL, the University of Iowa. Click HERE for details, and contact them at

AHUS-STUDY@uiowa.edu

Molecular Otolaryngology and Renal Research Laboratories (MORL) is a Joint Commission-approved CLIA-accredited diagnostic laboratory offering specialized assays of the complement system, genetic testing and clinical relevant interpretation services.  For More Information Contact:

Dr. RICHARD JH SMITH- Ph: (319)356-3612  E: richard-smith@uiowa.edu     MORL Ph: (319)335-6623

 

 

FMI about MORL Watch the Video

 


Affiliations: 

The Rare Renal Disease and Renal Genetics Clinic at the University of Iowa, at http://www.uihealthcare.org/clinic.aspx?id=20590 serves as a national referral center by providing evaluation and management services for children and adults with membranoproliferative glomerulonephritis type I, atypical hemolytic uremic syndrome, dense deposit disease and C3 glomerulonephritis, in addition to inherited renal diseases such as Fabry’s disease, nephronophthisis, polycystic kidney disease and congenital diseases of the kidney.

 

The Atypical HUS Center of Excellence at the University of Iowa at http://www.uiahuscenter.org/ combines both outreach and education efforts with a strong aHUS research mission and partners with The Foundation for Children with Atypical HUS to deliver full service care to aHUS patients and families alike. 

 

For more information about DDD visit http://www.healthcare.uiowa.edu/kidneeds/

aHUS Outreach and Education initiatives are provided by The Foundation for Children with Atypical HUS for patients, families, and medical providers.  For more information about aHUS

Visit www.atypicalhus.org           

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.

************************

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

Badge

Loading…

© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service