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…
All is quiet on the aHUS naming front
For several years now the naming of our disease has been discussed and new names proposed but nothing official has yet…
aHUS on rare disease day 2025
This is what Grok AI says about aHUS alliance efforts have been to promote Rare Disease Day 2025 awreness, 1. **Video…
Atypical HUS Research: Feb 2025 Roundup
Since its inception in 2008, and celebrated annually on the last day of February, world Rare Disease Day has been an…
Coronavirus remains a Concern in 2025
It’s largely wishful thinking that an illness can become ‘extinct’ across the human population, as evidenced by the resurgence of diseases…