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…
aHUS Trial Watch 15 (Iptacopan)
Iptacopan is a complement inhibitor that it is taken orally, twice daily. It works by inhibiting Complement Factor B (CFB ).…
aHUS Project for 2022 Rare Disease Day
Rare Disease Day 2022: aHUS Alliance Global Action to mark the day with a patient-centered video that focuses on questions posed by those affected by the rare disease atypical HUS.
It’s Time to re-Define aHUS Patient Engagement
Reaching out to Bridge Current Gaps As complement research has progressed and more is understood about thrombotic microangiopathy, it’s interesting that…