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…
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…
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…
Meningococcal Infection – Symptoms
Complement Inhibitor users are the group at most risk of meningococcal infection according to the Centre for Disease Control in the…
Diagnosis – aHUS Agenda Topic 3
An accurate and rapid aHUS Diagnosis is essential to the best of aHUS patients health outcome. Our expert gave a response…
aHUS – Stopping eculizumab treatment safely
For aHUS patients stopping eculizumab (or even Ravulizumab) treatment is an important but emotive issue. Having had the treatment when seriously…
Closing the CaHUS knowledge gap
Two days ago an article appeared in BLOOD journal which was the result of a comprehensive analysis of data about patients…