Atypical HUS affects about 2-3 per million population according to some estimates. Eculizumab, sold under the brand name Soliris by Alexion Pharmaceuticals is the only drug currently approved by the…
CardioRenal Syndrome: The Relationship between Heart & Kidney Function. Cardiorenal syndrome describes the group of medical characteristics (syndrome) which coexist between heart (cardio) and kidney function (renal). When either the kidneys or heart are not fulfilling their vital tasks, there can be a harmful and two-way interaction where decline in one of these major organs can seriously undermine function of the other. Does current patient education include these key points about CRS?
The third aHUS alliance affiliates meeting was held on 28 June 2015 , the day after the second UK aHUS patients and families conference, which most of the international…
Another pathway for the reluctant advocate. All aHUS Patients and their families have had their own aHUS experience. When it hit them most knew nothing of the disease itself but…
The reluctant advocate journey continues. By 2014 it was not unusual for aHUSUK to get emails from news journalists from newspapers , radio and TV. It was a big surprise…
One mother’s personal story about her young son’s diagnosis with atypical HUS. Connected to the broader themes of what happens after a rare disease diagnosis as working parents strive to navigate, childcare, emotional stress, and family impacts.
The side effects of treatment and residual ailments of an aHUS onset featured highly by aHUS families in the contribution to the aHUS Patients Research Agenda. The topic is covered…
One of the newest alliance affiliates is aHUS Kids Japan although it hard to believe that it was formed over two years ago now. Since its first meeting the group…