Registries for the rare disease aHUS
Global Action has more than any other organisation promoted the research registries that exist for our rare disease. Many rare diseases…
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…
Transcript: aHUS & COVID-19 Webinar
Article No. 341 27 April 2020 When news about the rare disease ‘atypical hemolytic uremic syndrome’ (atypical HUS) appears in medical…
aHUS Registry: SAB Summary for Dec 2019
Article No. 337 2 April 2020 When news about the rare disease ‘atypical hemolytic uremic syndrome’ (atypical HUS) appears in medical…
Atypical HUS & COVID-19
Article No 336 30 March 2020 Atypical HUS & COVID-19 Resources for the global aHUS Community The aHUS…
Global aHUS Registry: What’s it all About?
An article on FAQ regarding the aHUS global registry, including information gathered by atypical HUS patient advocates who represent the patient voice at the registry's Scientific Advisory Board meetings.