Vision for a 2024 aHUS Global Poll
A poll for the int'l atypical HUS community will launch in 2024, what does advocates envision for key info & comparisons?
Atypical HUS & Soft Tissue Examination?
As scientific discoveries advance, knowledge gaps slowly get smaller as well. This is true for any medical condition, but especially important…
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…
Newsletter: aHUS Global Advocate, 9th Edition
The aHUS Global Advocate Newsletter, highlights of news & views with a focus on the rare disease atypical HUS. Our 9th Edition, March 2024
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…