Advocacy for aHUS and “aHUSs”
When it comes to advocacy why say there is aHUS and there is also aHUSs? The rare disease aHUS is described…
Mastermind on aHUS
Imagine atypical haemolytic uraemic syndrome or aHUS on a well know quiz show, say Mastermind. How would it look?--- The Mastermind…
Pregnancy Associated TMA: a Start to Nomenclature Revision
It’s amazing how quickly medicine advances. For patients with some diagnoses, it seems like aspects such as new treatments or ‘standard…
E-sources for aHUS information and support
aHUS is a rare disease and rare disease patients are said to suffer from lack of awareness of their disease and…
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…
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