Discussion Forum (32)
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Current researchHello 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 in UncategorizedLatest Reply |
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SolirisCurrently an aHUS patient using or considering treatment with Soliris? Please add your voice to this forum! Two members of this website hav… Started by Linda Burke in Soliris |
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8 hours ago Reply by Kerri Grey |
Service AwardNathan is fortunate to belong to one of the best public school systems in Missouri, the Fox C-6 District, which has also been a National Di… Started by Cheryl Christine Pallme Biermann in Uncategorized |
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11 hours ago Reply by Linda Burke |
Soliris reduce the high bllod preasure ?hello members . Could you tell me anybody if Soliris reduce the high blood preasure in ahus. Recently in a Congress show it a case with an… Started by maria vicenta carratala rios in Soliris |
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Mar 8 Reply by Linda Burke |
Is this aHUS?I recently met a 3 year old boy who is suspected to have aHUS. The boy was asymptomatic until the beginning of February. He started passing… Started by Kamal D Shah in Uncategorized |
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Mar 1 Reply by Cheryl Christine Pallme Biermann |
Fund Raising Basics UNDER CONSTRUCTION!UNDER CONSTRUCTION AND ONLY FOR VIEWING AT THIS TIME-WILL NEED TO BE REVIEWED As our progress is leaping forward due to all of the new an… Started by Cheryl Christine Pallme Biermann in Uncategorized |
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Genetic TestingThe Foundation for Children with atypical HUS currently works with the University of Iowa to offer genetic testing to determine the particu… Started by Linda Burke in Uncategorized |
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Feb 23 Reply by Cheryl Christine Pallme Biermann |
soliris and meningococois a high risk the meningococo when using Soliris in a child? Started by maria vicenta carratala rios in Soliris |
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Feb 23 Reply by Linda Burke |
Seizures & Atypical HUS and Seizures with dialysisI've seen a few people mention seizures as part of Atypical HUS, did you know there is an adult disease with the clotting in the brain rath… Started by Cheryl Christine Pallme Biermann in Uncategorized |
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Feb 23 Reply by Linda Burke |
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 in Uncategorized |
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Feb 22 Reply by Cheryl Christine Pallme Biermann |
Current researchHello 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 in Uncategorized |
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Feb 14 Reply by Cheryl Christine Pallme Biermann |
About
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 2010 genetic testing and treatment.
Did you know...
• • • • • • • • • • • •
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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