A website with an all angles approach to aHUS
Some time back aHUS Global Action gave a presentation to an aHUS patient conference and included the following slide about its…
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…
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…
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…
Active life -aHUS Agenda Topic 13
An illness like aHUS can have an impact on a normal active life during the acute stage of the illness and…
Cure – aHUS Agenda Topic 9
A cure for aHUS would mean an individual would be at no risk of the disease again. Patients ask Will there…
A New Year and new to aHUS
It’s 2024. A New Year.This year around the world about 4000 people will newly onset with the primary form of aHUS.…