While beginning to give responses to the questions featuring in the Rare Disease Day Video, the alliance has also been collating the questions asked.
It has also consolidated them with the research questions gathered from the 2016 Global Survey, as well as those in the research publication “An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry”.
The resulting consolidated draft aHUS patient Research Agenda can be seen in the Info Centre by clicking here .
