Uncategorized (50)
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 aHUS Business Cards and FlyerBusiness CardsAttached is a template for aHUS Calling Cards (Business Cards) that can be used to help guide others to the Atypical HUS webs… Started by Jodi KaylerLatest Reply |
 Current research & presentations: for patients and healthcare providersHello all, I'd like to create a place where current research articles can be posted and sorted by topic. If you encounter a published stud… Started by Joy Lewis O'BrienLatest Reply |
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 Anti Factor H AntibodiesHi Everyone, I'm a new member in the group - my 5 year old son Jeremy was diagnosed with aHUS in September last year. In January we were… Started by Michele Haymes |
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May 9 Reply by Svetlana Finley |
Current research & presentations: for patients and healthcare providersHello all, I'd like to create a place where current research articles can be posted and sorted by topic. If you encounter a published stud… Started by Joy Lewis O'Brien |
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Apr 18 Reply by Joy Lewis O'Brien |
 The FutureHi everyone!!! I came across this article and I thought it could spark some discussion and hopefully could be something in the near futur… Started by Donna Kolp |
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Apr 16 Reply by sabrina kiernan |
aHUS Family History and North DevonJust as a deviation from the current activity in the UK in getting eculizumab for the treatment of all aHUS patients who need it, I am sta… Started by Len Woodward |
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 PrayersWas thinking that we needed a place to put special requests for prayer for our little ones, ourselves, our outlooks, etc. I know for me pe… Started by Christy |
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Mar 12 Reply by Linda Burke |
 MUBODINA?Found this... http://www.prath.eu/project.htm Is this something new or just a Eculizumab clone? there is still hope! Cheers, Frank Started by Frank Reyniers |
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Dec 1, 2011 Reply by Cheryl Biermann |
Auto-immune disease association with aHUS?My question - is there a possibility? I read somewhere that if genetic testing came back negative that auto immune deficiency should be inv… Started by Elizabeth Farrell |
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Nov 7, 2011 Reply by Joy Lewis O'Brien |
Combined liver/kidney transplant in adultsI was wondering whether anyone here has any experience of combined liver/kidney transplants in adults with aHUS? I had my first appointment… Started by Vicki Provan |
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Oct 16, 2011 Reply by Len Woodward |
 MCP mutationsPlease share any information you have about MCP mutations here -- thank you! Started by Steve Greene |
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Sep 29, 2011 Reply by Theresa Pereira |
 kidney stonesBefore we left the hospital, we found that Nathan's urine has a lot of calcium deposits. For now we will try and keep these from forming s… Started by Cheryl Biermann |
0 | Sep 26, 2011 |
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 "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...
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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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