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…
aHUS pioneers – Named it, Explained it, Treated it,
What follows is an imagined "dinner party conversation" about atypical hemolytic uremic syndrome (aHUS) among aHUS pioneers—Professor Conrad von Gasser, Professor…
Balancing the Family Table: Challenges of Serving Up Kidney-Friendly Recipes
The Struggle of Meal Planning in Families with a Kidney Patient When a family member has a rare kidney disease, meal…
AHUS TRIAL WATCH 21- RAVULIZUMAB AND PREGNANCY
An unusual aHUS trial study ( No.NCT06312644) has begun which involves mothers with aHUS and their babies. The official title of…
People have always had Primary aHUS?
The disease now called Primary aHUS has existed as long as humans had complement and coagulation systems. Dinosaurs might have had…
Familial Impact – RDD 25 video insights
The second part about the insights arising from the RDD25 aHUS video is about the rare disease familial impact. (Note: Part…
aHUS Patient Numbers :RDD 25 Video Insights
Remember in the COVID years of 2020 and 2021 the media was plastered with COVID patient numbers. They were ubiquitous and…
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