Is it OK to spend $2 billion plus on aHUS patients?
OK. Imagine yourself as an aHUS patient and advocate for other aHUS patients in your country and you have been asked…
Bill and Cheryl Biermann -Before aHUS Endeavours Fade
The aHUS endeavours series continue with an interview with Bill and Cheryl Biermann whose family was affected by aHUS at the…
Research into aHUS – an interview with a researcher
Last year Global Action brought attention to a research article ( Closing the CaHUS knowledge gap ) which stood out as…
What the RDD24 aHUS video tells us.
The Steven Spielberg of aHUS videos (Jeff) has produce another aHUS video for RDD24. Sixty six aHUS patients /carers starred in…
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…