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…
Pathways of Patient Engagement – 4 Myths of Rare Disease Advocacy: Part 3
4 MYTHS of Rare Disease Advocacy: Digging deeper into Common Misperceptions Pathways of Patient Engagement & Recruitment…
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…
aHUS Patient Group Expectations of 2018- India
The alliance has asked all the affiliated aHUS organisations and groups to provide their thoughts on what they expect to happen…
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…
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