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…
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…
Modifying the name for aHUS- a to do list?
The medical community may not agree on everything but all agree on modifying the disease name aHUS.. A report published in…
FDA has a record about aHUS
In 2023 a group from the aHUS community met with the FDA to talk to them about living with aHUS and…