100 days to Rare Disease Day 2018
aHUS is rarer than rare In patient advocacy for rare diseases like aHUS there seems to be a background cycle to…
aHUS “How To” – Find Atypical HUS Research
It can be a struggle to find information about medical conditions if you’ve been diagnosed with a rare disease, and…
Atypical HUS Facts – 2017 aHUS Alliance Fact Sheets
Looking for the latest 2017 facts and key research about the rare disease atypical hemolytic uremic syndrome (aHUS)? You’ve found…
aHUS in Poland – United in Advocacy
We welcome the aHUS community in Poland as the newest of aHUS patient organizations uniting with other nations under…
Patients as Partners
Patients are at the heart of healthcare. Patients are the recipients of medical care, and the participants in research and clinical…
How Do You Define Wellness if You’re Living with a Rare Disease or Chronic Illness?
What does the term ‘wellness’ mean if you’re a patient with a very rare disease or chronic illness? At…
Health IT in the Exam Room
A doctor’s waiting area and exam rooms today look much like they appeared in the 1950s. Patients used to sit in…
aHUS alliance website one year on
The aHUS alliance website has reached its first anniversary. Although some of the first blogs have dates preceding 28 May 2016…
Genetic tests – to know or not?
Genetics is very important to aHUS patients. aHUS is a very rare genetic diseases. aHUS patients get to know and understand…