Genetic tests – to know or not?
Genetics is very important to aHUS patients. aHUS is a very rare genetic diseases. aHUS patients get to know and understand…
Evidence is powerful and persuasive
There are three questions in the Rare Disease Day video which together exemplify how good can come together from patient stakeholder…
aHUS Pregnancy – Answers prompt more questions!
Not surprisingly, as it is one of the hottest topics* in the aHUS community, there was a high number of questions…
aHUS Immunity Boosts and Suppression- to vaccinate or not
The body's immune system is made up of many parts. aHUS patients know only too well about one part of the…
aHUS uncertainty is certain
What is certain is that aHUS patients vary. Like many health conditions there are considerable differences between aHUS patients in terms…
Sleep Disturbances and Chronic Kidney Disease
Many people with chronic kidney disease experience sleep disturbances, apparently affecting patients of all ages and many clinical subtypes. Here we present a curated list of information about sleep disorders and kidney disease, providing excerpts to provide an overview of how sleep disorders may have potential to impact atypical HUS patients of various ages and with varied health histories.
EURenOmics explained
A European rare kidney disease consortium is working on diagnostic tools and treatments for rare kidney diseases like aHUS. The initiative…
Affordable Care makes sense everywhere
Access to heath care and treatment is a global concern for all those with chronic, life threatening heath conditions; probably even…
Before or after , with or without- transplant decisions need data
Anyone, who has been involved in aHUS patient advocacy for some time, will be aware of the special place that those…
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