In 2023 a group from the aHUS community met with the FDA to talk to them about living with aHUS and that meeting is still on record on the FDA website for all to see.
The group talked about their personal experiences to illustrate an aHUS spectrum.
The key messages about aHUS left at that meeting were :
Takeaway messages for the FDA
- aHUS can be a spectrum of incidences within a spectrum of TMAs.
- Living with aHUS becomes harder with less or no retained kidney function.
- Complement Inhibitors are magic bullet treatments for those with uncontrolled
complement. - Patients see the benefits of complement inhibitor outweighing any non-mitigable risks
from their use. - More treatment options with more precise applications could be available to aHUS
patients during this decade and patients’ health outcomes could be improved further as
a result. - The name aHUS will be disappearing amid all TMAs reclassifications.
Six simple statement to summarise in essence what is important about aHUS then and the changes foreseen.
The record of the meeting is kept on the FDA website and can be read at this link HERE
Article No: 706
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