aHUS is its end really nigh? (2)
Article No 300 4 December 2019 In Part 1 the 95 year journey for aHUS to become in common use to describe our disease was sketched. The name has…
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aHUS is its end really nigh? (2)
Alexion holds Blood Drive for aHUS Day 2019
Alexion Pharmaceuticals holds corporate blood donation drive to mark aHUS Awareness Day, 24 Sept 2019.
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Alexion holds Blood Drive for aHUS Day 2019
aHUS at the Cleveland Rare Genetic Disease Symposium
Cleveland Clinic Children’s held its Rare Genetic Disease Symposium on 12 Sept 2019, with 3 aHUS-specific presentations to include the aHUS Alliance on the topic of ‘The Patients’ Perspective’.
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aHUS at the Cleveland Rare Genetic Disease Symposium
Dialysis Diaries
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…
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Dialysis Diaries
CardioRenal Syndrome: The Relationship of Heart & Kidney Health
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?
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CardioRenal Syndrome: The Relationship of Heart & Kidney Health
For aHUS -Good will come together
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…
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For aHUS -Good will come together
Finding Baby Bodmer- Learning about aHUS
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…
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Finding Baby Bodmer- Learning about aHUS
£2 billion a week and rising
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…
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£2 billion a week and rising