aHUS Project for 2022 Rare Disease Day
Rare Disease Day 2022: aHUS Alliance Global Action to mark the day with a patient-centered video that focuses on questions posed by those affected by the rare disease atypical HUS.
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…
It’s Time to re-Define aHUS Patient Engagement
Reaching out to Bridge Current Gaps As complement research has progressed and more is understood about thrombotic microangiopathy, it’s interesting that…
aHUS Trial Watch 14
A trial has been designed by Alexion to examine the efficacy of Ravulizumab to treat those with a Thrombotic Microngiopathy ,…
One genetic problem but two diseases
Take "diacylglycerol kinase " and add a "syndrome" throw in a letter from the Greek alphabet " ε" and you have…
Atypical HUS CAREGIVERS
Atypical HUS families emphasize and embody the ‘care’ portion of the word ‘caregiver’. Many of those caring for someone with atypical…
TMA: the Need for a Multidisciplinary Team Approach
Can MedEd Encourage Specialists to Form TMA Teams? Tiny clots which form in the body’s small blood vessels - in brief,…
Living with aHUS- what would you say?
If asked by health policy decision makers, and with a 500 words limit, how would you answer the question "how does…
Atypical HUS Research: What’s New OCT 2021
We marked aHUS Awareness Day (24 Sept) with our own advocacy-based research, releasing the 1st report of data and insights from…
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