The Atypical HUS Foundation

March 2016 Blog Posts (3)

Mid-Point Results - 2016 aHUS Global Survey

The following blog was originally posted on the RareConnect global aHUS webpage:

Update:  MARCH 30, 2016  

NEW - Survey now in 6 languages, with survey end date extended until April 15, 2016 !

There are new 2016 aHUS global survey…

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Added by Linda Burke on March 17, 2016 at 12:30pm — No Comments

Pain

Hi ! Just hoping someone sees this and has some sort of idea as to what I am talking about. I was diagnosed with atypical HUS June 2015. Since then my kidneys have been improving but I have INTENSE left side pain. It is right below my left kidney. After ct scans, getting my appendix removed and ultra sounds. No one is finding a reason for my pain. I am so frustrated. I am learning what I can about AHUS but does anyone have chronic pain with this disease?

Added by Liz mills on March 9, 2016 at 6:51pm — 2 Comments

aHUS Global Survey for Patents & Caregivers - Launched Rare Disease Day 2016

     The aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, launched a worldwide survey of aHUS patients and caregivers to mark Rare Disease Day 2016 (29 February).  A similar effort was conducted in partnership with RareConnect in 2014, with 214 respondents from 17 nations and responding to outreach in 6 different languages.  The 2014 poll included questions on common themes familiar…

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Added by Linda Burke on March 8, 2016 at 9:00am — No Comments

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