A Community Advisory Board for aHUS
Today it can be announced that a Global aHUS Community Advisory Board (CAB) has been formed. What is a Community Advisory…
Atypical HUS PROs: Patient Reported Outcomes
What are patient reported outcomes (PROS)? The aHUS Alliance Global Action team look at PROs and their importance in the aHUS space.
YOU’VE GOT aHUS!
The third article in the series about the aHUS Diagnosis Process is published today. Rare Disease Day 2022 The article covers…
aHUS Diagnosis Process-First Report
The first report on what 227 aHUS patients from around the world told us about their aHUS diagnosis experience and their…
Atypical HUS: What are you Waiting for?
Learning that you or a loved one have been diagnosed with a rare disease like atypical HUS is devastating. Imagine the…
Where and what next?
Article No. 297 15 November 2019 There is a saying in “management theory” that in the development of a…
Good will come together?
Some key issues exist for atypical HUS patient groups regardless of national borders, which launched the aHUS Alliance on 2013 Rare Disease Day, 28 February. How momentum among nations impacted aHUSUK recognition that atypical HUS advocacy collaboration brings new focus: good will come together.
Third Stop Bergamo Italy and another aHUS Expert Centre
Bergamo IT - Whistle-Stop Tour of 4 aHUS Centers in the EU: Visits to Three Nations in 6 days. The aHUS Alliance toured centers of aHUS expertise and research in July 2018. 3rd Stop: Mario Negri Institute, the Centro di Ricerche Cliniche per le Malattie Rare "Aldo e Cele Daccò"
A whistle stop tour of aHUS Expert Centres
Whistle-Stop Tour of 4 aHUS Centers in the EU: Visits to Three Nations in 6 days. "What is a Centre of Excellence?" lacks clarity, and is a concern of patients, families, and advocates. On behalf of atypical HUS advocates, the aHUS Alliance toured EU centers of aHUS expertise and research in July 2018.