conference
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Permalink Reply by Cheryl Biermann on -
Parent Conference PowerPoint Slides are NOW AVAILABLE !!
However, we cannot publicly post them. The use is limited to private sharing for medical purposes only.
Therefore, we can only email them, and we also have to restrict the mailing list to a) MDs or Researchers and b) Parents or patients over the age of 18. Finally, we do require that you have been a member for at least 30 days.
You can email Cheryl or Linda for a copy of the Powerpoints
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Permalink Reply by Lannette Yorgason on -
I fear a month from now, I will not find his link again to request them. I'm new to the site and am trying desperately to understand my disease. Any suggestions would be appreciated! Thanks!
Cheryl Biermann said:Parent Conference PowerPoint Slides are NOW AVAILABLE !! However, we cannot publicly post them. The use is limited to private sharing for medical purposes only.
Therefore, we can only email them, and we also have to restrict the mailing list to a) MDs or Researchers and b) Parents or patients over the age of 18. Finally, we do require that you have been a member for at least 30 days.
You can email Cheryl or Linda for a copy of the Powerpoints
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.
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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!
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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.
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