The Atypical HUS Foundation

July 2014 Blog Posts (5)

Just curious

About a month ago at a check up with the Nephrologist they decided to put Cole on Ciproflaxin. He takes 4.5 ml once a day everyday and the doctor said he wants him on it from now on. Has anybody else heard of this? Is this a standard precaution?

Added by Alison Montes on July 31, 2014 at 12:19am — 7 Comments

Another commercial for Iowa! Sign up today!

Hi everyone - another quick commercial for Iowa!  Use the link below to reserve your room (Covered by the foundation for both Friday, Oct 24, and Sat, Oct 25)!

https://www.starwoodmeeting.com/StarGroupsWeb/res?id=1406189080&key=8E04DC3

And use the following link to register with Amy Weaver at the University of Iowa for the actual conference:…

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Added by Phyllis Ann Talbot on July 30, 2014 at 4:30pm — No Comments

Looking for aHUS INFO and SUPPORT?

      Come hear an aHUS medical expert offer an overview of the disease, explain complement activation and aHUS, discuss aHUS diagnosis and treatment and MORE!

Check out these aHUS regional meeting dates and locations, and SAVE THE DATE (Oct. 24-26) for the Foundation’s MegaMeeting with our aHUS research partners at the University of Iowa!

 

August 22-23: …

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Added by Linda Burke on July 27, 2014 at 4:14pm — No Comments

RareConnect aHUS WEBINAR with Dr. T Goodship, July 31st

     Join the global aHUS conversation at a July 31st webinar hosted by RareConnect.org and featuring Dr. Tim Goodship.  As an international leader in aHUS research based in England,  Dr. Goodship will discuss key issues facing people living with atypical hemolytic uremic syndrome.

RareConnect, a joint partnership between NORD and EURORDIS, offers a webpage dedicated to aHUS concerns and…

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Added by Linda Burke on July 22, 2014 at 9:00pm — No Comments

Is There an App for That?

CLICK HERE

     Patients, caregivers, and family members face many challenges in the face of a rare disease diagnosis.  Sometimes it can feel like a triple whammy – the diagnosis of serious illness, difficulty finding information about a rare disease, and the impact of treatment, schedules, and emotional stress on the entire family. Wouldn’t it be nice to find some applications for…

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Added by Linda Burke on July 13, 2014 at 6:00pm — 1 Comment

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