The Atypical HUS Foundation

Research Papers and Studies

Our website maintains a Forum devoted to current research and presentations for patients and healthcare providers at http://atypicalhus.ning.com/forum/topics/current-research .

 

Some news has been publically posted regarding the clinical trial of Soliris (eculizumab) for pediatric patients with atypical HUS. As an independent and unaffiliated organization devoted to education, support, and outreach for aHUS patients and families, this interactive website of the Foundation for Children with Atypical HUS recognizes that some in our community are highly interested in this trial.
The National Institutes of Health posted an overview of the trial on www.clinicaltrials.gov. Utilize the link: http://www.clinicaltrials.gov/ct2/results?term=NCT01193348

Find the announcement of aHUS trial results at  http://atypicalhus.ning.com/profiles/blogs/announcement-of-ahus-trial

 

 

The information below is provided courtesy of Bill Biermann:

This page contains some of the most recent research and Powerpoint presentations. (Our Foundation has provided financial support for some of the projects on this page). We are thankful for the dedication shown by the researchers and medical professionals who have contributed. Their work is definitely a vocation!!


2009 Dr. Saland Presentation Powerpoint
Outcome of Renal Transplantation. by Davin

Davin Article
Complement Factor H in Twins by Fremeaux-Bacchi

Fremeaux-Bacchi Study
MCP and Factor H studies by Heinen

Heinen study
Factor H Article by Kavanagh

Saunders Article
General Article - Complement and Atypical HUS

Complement and Atypical HUS

Kemp Research Article
Overall Article

Renal Transplantaton (June 08)
Factor H Detailed study in Spain 2008


FOR MORE INFORMATION, PLEASE VISIT BILL BIERMANN'S WEBSITE at www.atypicalhus.50megs.com

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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