Cure – aHUS Agenda Topic 9
A cure for aHUS would mean an individual would be at no risk of the disease again. Patients ask Will there…
Transplant -aHUS Research Topic 8
Some aHUS patients have ended up with end stage kidney failure and need to have a kidney transplant. Such a transplant…
A New Year and new to aHUS
It’s 2024. A New Year.This year around the world about 4000 people will newly onset with the primary form of aHUS.…
aHUS Project for 2024 Rare Disease Day
Thank You to all Participants! View the completed Rare Disease Day 2024 project here http://bit.ly/RDday2024aHUS While Rare Disease Day is marked…
ChatGPT and aHUS Christmas chat ( and an aHUS carol)
Last year at this time Global Action published an article recording a conversation we had with ChatGPT ( an AI thing)…
Learn with USTMA – aHUS Videos
The United States Thrombotic Microangiopathy (USTMA) Consortium was formed in 2014 as a collaborative initiative to organize research efforts in the…
Stopping Treatment – aHUS Agenda Topic 7
Stopping aHUS treatment when no longer needed is a big decision for patients. Global Action put the patients research agenda question…
aHUS Trials Watch 19- Iptacopan
FDA has approved the use of Iptacopan, brand name Fabhalta, for PNH. Two trials demonstrated that this Factor B complement inhibitor…
Genetic Testing -aHUS Agenda Topic 6
Genetic testing again a topic but this time it is of the patient; and is important for prognosis as well as…
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