Adverse events – aHUS Agenda Topic 11
Although people’s experiences differ both treatment and long term effects of aHUS can be detected by patients. Patients have asked :…
Although people’s experiences differ both treatment and long term effects of aHUS can be detected by patients. Patients have asked :…
aHUS patient Jaac and his mother Ria are from the UK. Ria spoke to Global Action about her son’s meningococcal infection…
If there is no cure for aHUS then remission is a disease free state which is possible for aHUS patients. Patients…
In September last year a group of aHUS patients and parent/carers met with FDA and told them about aHUS. A summary…
A cure for aHUS would mean an individual would be at no risk of the disease again. Patients ask Will there…
Last year at this time Global Action published an article recording a conversation we had with ChatGPT ( an AI thing)…
Stopping aHUS treatment when no longer needed is a big decision for patients. Global Action put the patients research agenda question…
FDA has approved the use of Iptacopan, brand name Fabhalta, for PNH. Two trials demonstrated that this Factor B complement inhibitor…
Genetic testing again a topic but this time it is of the patient; and is important for prognosis as well as…