Review of the research that matters to aHUS patients (Part 2)
When this review of the aHUS patients research agenda began, the question was asked "is a patient research agenda worth while?".…
Review of the aHUS patient research agenda (Part 1)
During December and January last, there has been a review of each of the 15 topics in the patients research agenda.…
Epidemiology – aHUS Agenda Topic 15-
aHUS epidemiology is the about how many aHUS patients there are. The numbers onsetting and surviving. It’s “Incidence” and “prevalence”. How…
Family Planning- aHUS Agenda Topic 14
Pregnancy is a common trigger of aHUS, this can impact on someone who is predisposed or related to someone predisposed to…
Active life -aHUS Agenda Topic 13
An illness like aHUS can have an impact on a normal active life during the acute stage of the illness and…
Mental health – aHUS Agenda Topic 12
Mental health is an extensive issue of modern times focusing on depression and anxieties. The inverse of depression is self-esteem how…
Adverse events – aHUS Agenda Topic 11
Although people’s experiences differ both treatment and long term effects of aHUS can be detected by patients. Patients have asked :…
MENINGOCOCCAL INFECTION – JAAC’s STORY
aHUS patient Jaac and his mother Ria are from the UK. Ria spoke to Global Action about her son’s meningococcal infection…
Remission -aHUS Agenda Topic 10
If there is no cure for aHUS then remission is a disease free state which is possible for aHUS patients. Patients…
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