4 MYTHS of Rare Disease Advocacy
The FIRST Article in a Four Part Series Rare Disease Advocacy: Digging deeper into…
Atypical HUS – Rare Disease Day 2018
Rare Disease Day will be marked around the world on 28 February 2018 and the aHUS Alliance is pleased to announce…
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…