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…
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…