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Atypical HUS PROs: Patient Reported Outcomes

What are patient reported outcomes (PROS)? The aHUS Alliance Global Action team look at PROs and their importance in the aHUS space.

Atypical HUS PROs

Who, or what, are atypical HUS PROs: are these people, concepts, or initiatives? In medical terminology PRO stands for ‘Patient Reported Outcomes’ and refers to comments made directly and in…

What would stop eculizumab working for aHUS?

Eculizumab was approved by the US Food and Drugs Administration for PNH for 15 years ago on 16 March. This September coming, it will be 11 years since the FDA…

What does an aHUS patient look like

Let us kick off the responses to the RDD2022 Video with a couple of questions about the characteristics of aHUS patients. I may have written in the past that if…

Rare Disease Day 2022 aHUS Questions

When Jeff, the producer of these awareness day videos, suggested that "questions" should be the theme of this years' RDD Video I was surprised. Surprised because it had been five…

TÜRKİYE’DE Kİ; aHÜS H; ASTALIĞINA GENEL BİR BAKIŞ!

Atipik Hemolitik Üremik Sendrom kısaca aHÜS, vücudumuzun bağışıklık sisteminin ana elemanlarından olan ana savunma sisteminin de ki bir parçanın regülasyon bozukluğu ile seyreden bir hastalıktır. Ana savunma sisteminde regülasyonun bozulması…

aHUS Diagnosis Process – Report 2

The second article in the series about the aHUS Diagnosis Process has been published on the website today. Research made possible through the contributions of 227 aHUS people from around…

aHUS Trial Watch 14

A trial has been designed by Alexion to examine the efficacy of Ravulizumab to treat those with a Thrombotic Microngiopathy , TMA, caused by a trigger. This somewhat vague scoping…