An article on FAQ regarding the aHUS global registry, including information gathered by atypical HUS patient advocates who represent the patient voice at the registry’s Scientific Advisory Board meetings.
As children with kidney disease grow to become adolescents, their medical care often changes from a pediatric to adult nephrology care setting – what common issues for teen patients surround this transition? A look at social, emotional, and medical aspects.
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…
Alexion Pharmaceuticals holds corporate blood donation drive to mark aHUS Awareness Day, 24 Sept 2019.
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’.
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…