An open letter to Alexion for 2018
1 January 2018 Dear Alexion As you know aHUS is a life threatening and debilitating condition. You have the only treatment…
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…
4 MYTHS of Rare Disease Advocacy
The FIRST Article in a Four Part Series Rare Disease Advocacy: Digging deeper into…
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…
TRY THE CHRISTMaHUS QUIZ
It is 12 days to Christmas and soon more time will become available to relax and unwind, so why not do…
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…
What happens in British Columbia does not stay in British Columbia
The recent incident in British Columbia about access to eculizumab, which was referred to in a recent blog ( click here)…
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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