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.


  • Know about Little Bernat!

    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.

  • First Rare Barometer Voices survey on the impact of rare diseases on daily life

    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!




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