Remission -aHUS Agenda Topic 10
If there is no cure for aHUS then remission is a disease free state which is possible for aHUS patients. Patients…
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.…
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…
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