PRO-RBDD is an international collaboration network that has developed a web database designed to collect and prospectically analyse data on the prevalence of rare bleeding disorders which do not have homogenous registries in the world.
Current studies are analysing fibrinogen and factor XIII deficiencies.
PRO-RBDD is part of the EUHANET project led by Dr Mike Makris from Sheffield in the UK.
EUHANET partners are:
European Haemophilia Consortium (EHC)
European Association for Haemophilia and Allied disorders (EAHAD)
University Medical College Utrecht
Medical Data Solutions and Services (MDSAS)
Fondazione IRCCS Ca’ Granda in Milan, Italy.