Percentages and probabilities -AHUS AND MATH(S)
A frequent discussion on aHUS social media platforms is about "probabilities" and "percentages". The probabilities of someone inheriting an aHUS predisposing…
New Canadian Expert Center for Complement-Mediated Rare Diseases
Launch of a Canadian Expert Center for Complement-Mediated Rare Diseases (CHU Sainte-Justine Centre d'expertise sur les maladies rares médiées par le…
Is there a PDA for aHUS treatment continuation?
A PDA or patient decision aid is becoming an important part of the increasing shared decision making by patients and doctors.…
Registries for the rare disease aHUS
Global Action has more than any other organisation promoted the research registries that exist for our rare disease. Many rare diseases…
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…
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…
A chat about the Ravu-Pregnancy Registry
Recently I wrote an article about a clinical study which is an Ravulizumab pregnancy registry in the USA. Then tried to…
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