aHUS in modern music genre. #2
Continuing the theme of aHUS in verse we looked at different music genre and asked for RAP , Country , Blues…
aHUS’ “Beacon in the night” – #1
Last Christmas we published an AI carol about aHUS. For some “light” insights into the disease we have used AI once…
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…