Trial Watch 22 – Iptacopan and Crovalimab for aHUS
Not much heard about these trials these days and when they will conclude and move to the approval stage. The aHUS…
Are some “new” ravulizumab adverse events a worry for aHUS patients?
Side effects from ravulizumab treatment can be a worry. They are listed in the patient leaflet that comes with every vial…
Atypical HUS Facts: 2025 -Sept- 2026
2025 – SEPT – 2026 Atypical HUS: Fact Sheet Atypical Hemolytic Uremic Syndrome – a Rare Disease Information and medical…
PNH Ve aHÜS İle Mücadele Derneği̇n’den Haberler
PNH VE aHÜS İLE MÜCADELE DERNEĞİN’DEN HABERLER Derneğimiz tarafında ilk defa gerçekleştirilen toplantı organizasyonu, İstanbulÜniversitesi Tıp Fakültesi Salonlarında, 15 Şubat 2025…
Pregnancy exposure impact : Eculizumab and Ravulizumab
Recently information about the Ravulizumab Pregnancy Registry was featured on this site. Ever since Ravulizumab was approved the issue of its…
Primary aHUS renaming progress
The renaming of Primary aHUS is inevitable. The experts have said so and the name change creep, albeit unofficial, is gathering…
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…
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…
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