An application for the ERN in Rare Hematological diseases (ERN-RHD) is being developed led by ENERCA coordinator, Prof Joan Lluis Vives Corrons.
Network disease coverage will be expanded by including Rare Hematological diseases in thematic sub-nets.
JOIN THE ERN-RHD (here)
October 3, 2016
Bernat is a young boy who suffers from a grave case of the rare hemolytic disease known as Pyruvate Kinase Deficiency. Little Bernat has a wonderful website to inform people about PK Deficiency and to raise global awareness about the little things that people can do to help children like Bernat.
September 15, 2016
EURORDIS has developed the Rare Barometer Voices, a new interactive survey panel available in 23 languages that collects the experiences of people that are living with or affected by a rare disease. The first stage of the study is now open!