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…
Transplantation and aHUS – a top topic
Transplantation of aHUS dialysis patients is a priority and top topic for the aHUS alliance. Transplantation of those with aHUS has…
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…
The aHUS Registry Explained (Part 1)
From its beginning the aHUS alliance’s website has featured articles about the aHUS Registry and the work it does (click here…
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