aHUS Trials Watch 5
An update on STOPECU ( NCT02574403) -the French Study of the withdrawal from eculizumab treatment which began in late 2015. ( click…
aHUS Rare Disease Day 2018 Cohort- Report 1
Rare Disease Day 2018 had the theme of research. As its contribution to Rare Disease awareness this year , the aHUS…
The Many Faces of Atypical HUS: Rare Disease Day 2018
What happens after the world annually marks Rare Disease Day on the last day of February? We carry on…
Creating Your Advocacy Footprint in the Rare Disease Arena
What does the term ‘rare disease advocacy’ mean to you? Patients and caregivers speaking up on social media or…
aHUS Trials Watch 4
Some news about trials affecting those with aHUS; but at two ends of the clinical research spectrum. The first is about…
Transplant and aHUS Risks
The aHUS Alliance was invited by the aHUS Registry Scientific Board to say what matters most to patients in aHUS research.…
aHUS Patients have a value beyond the balance sheet
It was little known, but Alexion decided years ago that it would reinvest 40% of any of its profits from the…
They do not get it , or do they?
Everyone gets ill at some time don't they? Whether it is for example a cold, stomach upset or measles, people know…
Patients Included: Reality or Unmet Goal? (#4: MYTHS of Rare Disease Advocacy)
The Last in the aHUS Alliance Four Part Series Patients Included: Reality or Unmet Goal? 4 MYTHS of Rare…
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