Informação Salva Vidas – SHUa
Informação Salva Vidas - SHUa A informação para pacientes brasileiros com SHUa era quase tão rara quanto a própria doença, mas…
India: Eculizumab Approved by CDSCO for aHUS & PNH
After years of waiting, eculizumab Soliris(R) has been approved by India’s Central Drugs Standard Control Organisation (CDSCO) as an approved drug…
Modifying the name for aHUS- a to do list?
The medical community may not agree on everything but all agree on modifying the disease name aHUS.. A report published in…
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…
Discontinuation – no longer needing complement inhibition
Complement inhibition treatment discontinuation is a topic that Global Action has led on in the aHUS patient advocacy world for several…
RDD25: MORE THAN YOU CAN IMAGINE!
Thank You to all Participants! View the completed Rare Disease Day 2024 project here http://bit.ly/RDday2025aHUS The background to the video is…
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…
Spotlight on aHUS Research: Dec 2024
It’s been a busy 4th quarter to round out 2024 for our aHUS Alliance Global Action team, and we’d like to…
It’s ChristmaHUS
Try the ChristmaHUS Quiz and when you finish join in with the aHUS Christmas Carol. Here’s a 20-question multiple-choice quiz on…