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…
It’s amazing how quickly medicine advances. For patients with some diagnoses, it seems like aspects such as new treatments or ‘standard…
aHUS is a rare disease and rare disease patients are said to suffer from lack of awareness of their disease and…
A frequent discussion on aHUS social media platforms is about "probabilities" and "percentages". The probabilities of someone inheriting an aHUS predisposing…
Launch of a Canadian Expert Center for Complement-Mediated Rare Diseases (CHU Sainte-Justine Centre d'expertise sur les maladies rares médiées par le…
A PDA or patient decision aid is becoming an important part of the increasing shared decision making by patients and doctors.…
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 Derneğimiz tarafında ilk defa gerçekleştirilen toplantı organizasyonu, İstanbulÜniversitesi Tıp Fakültesi Salonlarında, 15 Şubat 2025…
Recently information about the Ravulizumab Pregnancy Registry was featured on this site. Ever since Ravulizumab was approved the issue of its…
For the past nine years Global Action has been at the forefront of featuring the aHUS name change journey. Currently proposals…