FDA has a record about aHUS
In 2023 a group from the aHUS community met with the FDA to talk to them about living with aHUS and…
Is a patient organisation still needed for aHUS?
As another year turns in the aHUS world it is perhaps a time to reflect once more on the mission of…
Mental health aHUS Day video- insights
The video for aHUS awareness day 2024 was about mental health and having aHUS. Global Action has looked again at it…
Out with old in with the new- not quite just yet
On the 10th anniversary of international aHUS awareness day it is timely to raise awareness that the old term aHUS is…
aHUS awareness day and aHUS alliance Global Action
Introduction Atypical Hemolytic Uremic Syndrome (aHUS) is a rare, life-threatening disease that remains largely unfamiliar to the general public and even…
2024 aHUS Awareness Day: Theme for the aHUS 24 Sept Campaign
The theme for aHUS Awareness Day 2024 is 'Mental Health'
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…
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…
AHUS patients met with FDA and this is what they said
In September last year a group of aHUS patients and parent/carers met with FDA and told them about aHUS. A summary…
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