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…
A patients perspective of aHUS name change
For the past nine years Global Action has been at the forefront of featuring the aHUS name change journey. Currently proposals…
Global Poll for aHUS – Progress Report
Last Summer nearly three hundred aHUS people from around the world participated in the 2024 Global Poll. They filled in a…
Real world data on aHUS treatment discontinuation
A few days ago an article appeared in The Lancet which claims to be the largest real world analysis of complement…
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…
aHUS Nomenclature: Bridges to the Future
Scientific advancements in the last decade have yielded promising avenues on multiple fronts, including those related to atypical HUS and other…
TMAs -How many are there?
The Primary aHUS community now understands that there is no accurate record of how many "aHUS" patients there are , but…
Patients from around the world discuss aHUS name change
aHUS patients have been deliberately not engaged in the proposal to change the name aHUS into a plethora of thrombotic microangiopathy…