aHUS as a rare disease 10 years ago
10 years ago global information about aHUS patients was more or less non existent. Vey sparse at best. An aHUS alliance…
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…
Ambitions for Rare Diseases are aHUS ambitions too
Below is a “framework of ambitions” for those with rare diseases which appeared on Rare Disease Day 2024 (see link below…
Characteristics of aHUS patients
Although sparse, getting characteristics information about aHUS patients can come from a variety of sources. A recent article in The Lancet*…
Who to call aHUS -D59.32 or D59.39?
Who are Alois Alzheimer, Cecil Alport, Burrill Crohn, Guillaume Duchenne, James Parkinson and Graham Hughes and what do they have in…
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…
Aspirations for aHUS- a to do list.
You know how when a group forms and they create ideas of what the group can do together - they have…
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…
Variants of uncertain significance (VUS) for aHUS
If or when aHUS patients or their families are tested for complement genetic variants which could be the cause of their…