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…
Affordable Treatment – aHUS Agenda Topic 5
Affordable treatment is a big issue for the majority of the world’s aHUS patients. Many live in countries that cannot afford…
aHUS Trial Watch 18 – subcutaneous Ravulizumab
To the best of Global Action’s knowledge there has not been a trial of subcutaneous Ravulizumab for use in the treatment…
Personalised Treatment Delivery – aHUS Agenda Topic 4
aHUS patients are likely to have personal preferences for a treatment and as more options become available a personalised approach for…
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