Medication Guide Eculizumab
Have you ever seen or read the medication guidance for using Eculizumab, or even Ravulizumab? There is one in every vial…
Dr Leonard Bell – Before aHUS Endeavours Fade
Those new to the disease aHUS may not know the significant contribution that Dr Leonard Bell has made to their treatment…
Epidemiology – aHUS Agenda Topic 15-
aHUS epidemiology is the about how many aHUS patients there are. The numbers onsetting and surviving. It’s “Incidence” and “prevalence”. How…
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 :…
MENINGOCOCCAL INFECTION – JAAC’s STORY
aHUS patient Jaac and his mother Ria are from the UK. Ria spoke to Global Action about her son’s meningococcal infection…
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…
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…
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…