The Atypical HUS Foundation

Research

 

 

We gratefully acknowledge the efforts of Grace Jeschke, who compiled this listing of articles.

 

aHUS Research Forum Index

(Listed in reverse chronological order, by year at end)

 

 

 

aHUS Disease Overview

000276545.pdf, 1.4 MB  

AHUS Review NEJM 2009.pdf, 1.3 MB

AHUS Rev Suppl NEJM 2009.pdf, 245 KB

 

Diagnosis and Disease Presentation

aHUS clinical distinctions.pdf, 565 KB

 

Mutations/Factors 

000276545.pdf, 1.4 MB  

Hyperfunctional fB (2009).pdf 2.2 MB (September)

super Factor B Conway Blood 2009.pdf, 321 KB (September) 

Thrombomodulin NEJM July 2009.pdf, 4.4 MB

aHUS clinical distinctions.pdf, 565 KB

 

Genetics

000276545.pdf, 1.4 MB  

Hyperfunctional fB (2009).pdf 2.2 MB

super Factor B Conway Blood 2009.pdf, 321 KB

Thrombomodulin NEJM July 2009.pdf, 4.4 MB

aHUS clinical distinctions.pdf, 565 KB

CFH liver-kidney transplantation. 2008.pdf, 2.8 MB  

 

Complement (Figures)

000276545.pdf, 1.4 MB  

AHUS Review NEJM 2009.pdf, 1.3 MB

AHUS Rev Suppl NEJM 2009.pdf, 245 KB

super Factor B Conway Blood 2009.pdf, 321 KB  

 

Plasma Therapies 

Protocol & registry info.pdf, 197 KB  

Bilateral nephrectomy plasma resistant.pdf, 562 KB  

 

Eculizumab (Soliris ®)

NEJM Prophylactic Soliris kidney transplant.pdf, 202 KB

Soliris 012609 NEJM.pdf, 364 KB  

Soliris dosage info 051409 NEJM.pdf, 79 KB  

 

Case Studies

NEJM Prophylactic Soliris kidney transplant.pdf, 202 KB

Hyperfunctional fB (2009).pdf 2.2 MB

super Factor B Conway Blood 2009.pdf, 321 KB

Soliris 012609 NEJM.pdf, 364 KB  

Soliris dosage info 051409 NEJM.pdf, 79 KB  

Remuzzi 2005 AmJTrans.pdf, 109 KB  

 

Transplant Considerations

NEJM Prophylactic Soliris kidney transplant.pdf, 202 KB

Saland Transplant guidelines 2007.pdf, 101 KB  

CFH liver-kidney transplantation. 2008.pdf, 2.8 MB  

Remuzzi 2005 AmJTrans.pdf, 109 KB  

 

Additional Research Articles, Listed by Publication Year

 

2010

epidem aHUS mutations (ann hum gen 2010), 288 KB

000276545.pdf, 1.4 MB  (April)

NEJM Prophylactic Soliris kidney transplant.pdf, 202 KB

 

2009

AHUS Review NEJM 2009.pdf, 1.3 MB (October)

AHUS Rev Suppl NEJM 2009.pdf, 245 KB (October)

Hyperfunctional fB (2009).pdf 2.2 MB (September)

super Factor B Conway Blood 2009.pdf, 321 KB (September) 

Thrombomodulin NEJM July 2009.pdf, 4.4 MB (July)

Soliris dosage info 051409 NEJM.pdf, 79 KB  (May)

Saland Transplant guidelines 2007.pdf, 101 KB  (may)

Protocol & registry info.pdf, 197 KB  (April)

Soliris 012609 NEJM.pdf, 364 KB   (January)

 

2005-2008

CFH liver-kidney transplantation. 2008.pdf, 2.8 MB  

aHUS clinical distinctions.pdf, 565 KB (2006)

Remuzzi 2005 AmJTrans.pdf, 109 KB

 

Research Articles Prior to 2005

Bilateral nephrectomy plasma resistant.pdf, 562 KB  (1996)

 

 

Please visit our aHUS Research Forum for Additional Articles

 

Looking for professional insight into this rare disease?

Our Doc to Doc Directory offers free consultations via phone or email – check out our list of physicians with clinical experience regarding aHUS diagnosis and treatment.

 

Genetic Testing Information

 

aHUS Cinical Channel  Physicians and researchers from the USA and the UK offer information about atypical HUS.

 

 

aHUS Patients and their Families seeking information may be directed to these resources:

 

aHUS Bootcamp – A family guide to facing the medical challenges of aHUS.

 

Rare Disease Resource List – Helpful links listed by categories such as Genetics, Caregiver Support. Patient Assistance Programs, Education, Disability and SSI, and much more.  A great resource for patients and their families to broaden their search for information and support, since most links offer their own specialized resource subpages.

 

Patient Materials – Information and support from the Foundation for Children with Atypical HUS, serving families and aHUS patients of all ages.

 

National Institutes of Health

An excellent, brief overview of atypical HUS: http://ghr.nlm.nih.gov/condition/atypical-hemolytic-uremic-syndrome

 

Atypical Hemolytic-Uremic Syndrome, GeneReviews, NCBI Bookshelf.   A detailed overview of aHUS with multiple research links listed for a variety of categories, from disease diagnosis and management to factor mutations and genetic screening . http://www.ncbi.nlm.nih.gov/books/NBK1367/

 

If you have other articles to be considered for inclusion here, or need further information or resources, 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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