aHUS Trials Watch 5
An update on STOPECU ( NCT02574403) -the French Study of the withdrawal from eculizumab treatment which began in late 2015. ( click…
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 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…
aHUS Group Expectations for 2018 (continued)
Following aHUS India's response came two replies from The Netherlands and UK in Europe. Their expectations reflect a very different position…
Does the aHUS alliance add value?
Adding value in patient advocacy is obvious. Or is it? Those involved in patient advocacy constantly ask themselves “Am I achieving…
4 Myths of Rare Disease Advocacy: Part 2
The SECOND Article in a Four Part Series Rare Disease Advocacy: Digging deeper into Common Misperceptions Although there…
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