Research Papers and Studies
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
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS 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 "About aHUS" tab 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...
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It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
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