The Atypical HUS Foundation

aHUS for Clinicians

 

 

 

 

 

Click on the Resource Pages Below

 

 

Doc to Doc Directory 

Physicians with expertise in aHUS diagnosis, treatment, and patient issues offer phone and/or email consultation with other medical personnel.  Top aHUS clinicians and researchers from across the USA, as well as Canada and the UK, provide information and physician outreach as a volunteer service striving to improve aHUS patient outcomes.


The aHUS Clincial Channel  (YouTube) offers videos packed with a wealth of solid scientific information about atypical HUS.    Top researchers and clinicians in the USA and the UK present topics such as diagnosis and treatment of aHUS, genetics, the role of complement, and more.

 

Research

A quick reference list for an overview of current aHUS research and journal articles.  Additional material is available in the family Research Forum.

 

aHUS Myths vs. Facts

"Within the last two decades, major advances in our understanding of the thrombotic microangiopathies has  greatly expanded the boundaries of our knowledge base and enabled us to view these disorders in a  fresh perspective. Misconceptions existed concerning aspects of the disease relevant to securing the correct diagnosis and selecting the optimal treatment approach."  Read more....

Dispelling Common Misperceptions in aHUS

Presented to The Western Pennsylvania-Allegheny Health System (WPAHS)

at Pittsburgh, PA on February 20,2013 (Revised Aug. 2013)

 by Robert B. Kaplan, MD

 

 

aHUS Center of Excellence 

The aHUS Center of Excellence is a component of the Carver College of Medicine at the University of Iowa.  The overarching objective of the University of Iowa Pediatric Nephrology Center of Excellence is to improve the healthcare of patients with atypical Hemolytic Uremic Syndrome (aHUS) and other aHUS-like diseases through a collaborative effort focused on the presentation, rapid diagnosis, underlying genetics and pathophysiology of aHUS.

             

 

Cincinnati Children’s Hospital Medical Center

Cincinnati Children’s Hospital Medical Center offers a broad platform of molecular and cellular diagnostic testing for thrombotic microangiopathies (TMA), including atypical hemolytic uremic syndrome (aHUS) and thrombotic thrombocytopenia purpura (TTP).  Test results are incorporated in a customized summary, where clinical information is incorporated with the genetic, biochemical and functional test results.

Cincinnati Children’s has board-certified pediatric nephrologists, hematologists, molecular geneticists and genetic counselors to provide telephone or email consultations to referring physicians regarding test selection, clinical interpretation, medical management and follow-up testing, genetic counseling, and additional studies of at-risk family members

General Contact Information for Cincinnati Children’s:

Phone:  513-636-4530                       Fax:  513-636-8924            Email:  nephclinicallab@cchmc.org

 

Contact the thrombotic microangiopathy team: 

Dr. Ralph A. Gruppo          Director, Comprehensive Hemophilia and Thrombosis Center

Phone:  513-636-4269                                       Email:  ralph.gruppo@cchmc.org

Dr. Bradley P. Dixon

Phone:  513-636-4531                                       Email:  bradley.dixon@cchmc.org

 

 

MORL - aHUS Genetic Testing

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.

MORL is associated with the Rare Renal Disease and Renal Genetics Clinic at the University of Iowa 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.

General Contact Information for MORL:

Phone:  319-335-6623            Fax:    319-353-5869           Email: amy-weaver@uiowa.edu

 

For More Information Contact:

Dr. Richard JH Smith       Director, MORL

Phone:  319- 356-3612                       Email:  richard-smith@uiowa.edu

 

BloodCenter of Wisconsin

BloodCenter of Wisconsin, a pioneer in diagnostics, offers a comprehensive laboratory panel for evaluation of patients with thrombotic microangiopathy (TMA) in 28 days, including a rapid genetic evaluation to support diagnosis of Atypical Hemolytic Uremic Syndrome (aHUS).

“BloodCenter of Wisconsin’s comprehensive panel for the evaluation of aHUS improves patient care by allowing confirmation of the clinical diagnosis, facilitating the screening of family members at risk, and possibly directing therapeutic decisions.”
Kenneth Friedman, MD
Medical Director,
Hemostasis Reference Laboratory
 

For questions please contact:
Client Services
Phone: 800-245-3117, ext. 6250
Fax: 414-937-6206
E-mail: LabInfo@bcw.edu
 

Machaon Diagnostics

Machaon Diagnostics is a specialty bleeding and clotting clinical reference laboratory running the fastest testing in the country for thrombotic microangiopathies (TMA).

We offer a 24-hour turnaround time for ADAMTS-13 testing used to diagnose thrombotic thrombocytopenia purpura (TTP) and our aHUS Genetic Panel™ has a 48 hour turnaround time. This test is sometimes used by clinicians to confirm their clinical diagnosis of atypical hemolytic uremic syndrome (aHUS).  

Machaon Diagnostics provides this aHUS testing to doctors and hospitals all over the country and can provide draw kits with pre-paid shipping upon request. Each report from Machaon Diagnostics comes with the direct phone number of our medical director who has significant experience with TMAs.

General Contact Information for Machaon Diagnostics:

3023 Summit Street

Oakland, CA 94609

Phone:  510-839-5600                       Fax:  510-839-6153           

Email:  lab@machaondiagnostics.com

 

SUMMARY of aHUS Outreach/Education Materials 

An overview of outreach and education materials are listed (brochures, aHUS BootcampRare Disease Resource List, and MORE!)  that offer information and insight into atypical hemolytic uremic syndrome,  a complex and ultra-rare disease.

 

Eculizumab (Soliris®) 

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 websites with detailed information. To learn more about aHUS, visit www.aHUSsource.com. To learn more about treatment with Soliris, visit www.Soliris.net.

 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 www.Soliris.net/patients/one-source.

 

Rare Disease Challenges:  Support for Patients & Families     VIDEO:  Featuring Jody L. Jones, Ph.D., Clinical Psychologist  (University of Iowa, Transplant Program)

A chronic illness or rare disease diagnosis affects all individuals and groups associated with the patient. Managing medical aspects may impact family dynamics, personal relationships, professional or work areas, and other interactions across all facets of everyday life.

The video’s Resource List provides links to organizations and resources that offer assistance to those challenged with rare disease issues and concerns. Our Patient & Family Assistance Tips suggest ideas for friends, relatives, coworkers, or community members to offer support.

Printable Page –Video QR code with Resource List Link.  Distribute to patients/families/caregivers.   

Rare Disease Resource List

 

Hundreds of resource links to inform and support patients, families, and professions.

Questions?  Please contact Linda@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.

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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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