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…
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…
Informação Salva Vidas – SHUa
Informação Salva Vidas - SHUa A informação para pacientes brasileiros com SHUa era quase tão rara quanto a própria doença, mas…
India: Eculizumab Approved by CDSCO for aHUS & PNH
After years of waiting, eculizumab Soliris(R) has been approved by India’s Central Drugs Standard Control Organisation (CDSCO) as an approved drug…