The Atypical HUS Foundation

sabrina molinari ,Isabella Pagan
  • Female
  • Rochester, NY
  • United States
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Sabrina molinari ,Isabella Pagan's Friends

  • Megan Russo
  • Linda Burke
 

sabrina molinari ,Isabella Pagan's Page

Profile Information

Birthday
July 28
Do you have a friend or family member diagnosed with aHUS?
Yes
I am an adult aHUS patient.
No
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
Yes
My membership request involves business interests as I seek additional aHUS information for business applications.
support an more information my daughter has ahus
My child ( or myself as a patient) is best described as:
Tested but Awaiting Results

Comment Wall (3 comments)

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At 9:44am on April 14, 2017, Linda Burke said…

Hi Sabrina,

Hope things are going well for you and your family.  We have a new member who will soon be visiting the Tampa area and would like to see a physician - Lisa Grooms was kind enough to remind me that you are not far from Tampa.  Hoping that you'd be kind enough to say hello and share physician info with him http://atypicalhus.ning.com/profile/SantoshSuryawanshi

At 11:01am on February 27, 2015, Linda Burke said…

Hi Sabrina,

Fabulous news, I can't wait to see the news story from your Ft. Meyer's FOX News story.  I hope that you'll post that link on our Foundation's Facebook page and here as well, since there's a video box right on this site's Home Page.  

Did you see the aHUS meetings in our Event tab for Florida?

At 11:29pm on August 28, 2013, Linda Burke said…

Hi Sabrina,

As your sweet baby girl has been diagnosed with aHUS just recently, you might want to see our article on aHUS basic information, our 'aHUS Bootcamp" viewable at http://atypicalhus.ning.com/page/a-parents-perspective-ahus .  I'm not familiar with the Strong Memorial Hospital in Rochester, NY but hope that Dr. Varade and the rest of your Isabella's care team have given you information and options to explore.  Feel free to check out various areas of the website, and to blog or comment so that you can connect with others for shared insights into aHUS challenges.


 
 
 

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