You don’t have aHUS any more
You don't have aHUS any more. Well you have aHUS but not for much longer. And no you won't be cured.…
aHUS clinical trials are not that easy
To answer some of the questions in the aHUS Patients Research Agenda clinical trials will be needed. Take the issue of…
Why aHUS for them and not me
Earlier this year in the series of articles following the Rare Disease Day video one featured a question by Elisabeth from…
Improving outcomes for “aHUS” patients, I was there.
As an aHUS advocate you can often be surprised by events. Nearly three months ago I received an e mail inviting…
Funds raised by aHUS people contribute to diagnosis research
Fund raising, which began when aHUSUK still existed, has been put to use to help fund research which may improve the…
aHUS Patients’ Qualities -Together
aHUS patients are people. People are different. But only aHUS people have had aHUS. It is something they share together. As…
What about aHUS and COVID Vaccinations and access to genetic testing and genetic research
There was one question about COVID vaccinations and aHUS in the RDD2022 Video, Global Action featured several articles about COVID vaccination…
RD Day 2022: aHUS Webinar hosted by AKF
In honor of this year's Rare Disease Day on February 28, the American Kidney Fund (AKF) will be hosting “Rare Disease…
SHU atypique: RARE à l’écoute Podcasts
Si vous désirez vous informer et aller plus loin dans la connaissance de cette maladie rare, nous vous invitons à lire…