AHUS patients met with FDA and this is what they said
In September last year a group of aHUS patients and parent/carers met with FDA and told them about aHUS. A summary…
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.…
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)…
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…
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