Keep informed about the latest information on Rare Hematological Diseases!

The correct treatment and management of infection by Coronavirus (COVID-19) in patients affected by Rare Hematological Diseases may be challenging given the rapid spread of the pandemia and limited literature so far

Be part of the global rare disease community at ECRD 2020 and shape the future for people living with a rare disease! Register now!

The ITHANET portal is an expanding resource for clinicians and researchers dealing with haemoglobinopathies by integrating information on database of variations (IthaGenes), epidemiology (IthaMaps) and HPLC data (IthaChrom), and also now gene-ranking metric IthaScore

The objective of this paper is to trigger a strategic discussion on health data and ERNs that will allow the Networks to have a long-term strategy that is aligned with their needs and ambition

The European Medicines Agency (EMA) hosted a workshop in November 2019 to discuss aspects that should be considered by all stakeholders to facilitate the use of data collected by cancer registries, as core data elements, quality assurance measures among other considerations.

Webinar program is mainly addressed on very rare diseases, complex disorders, highly specialized procedures and implementation of guidelines

Due to COVID-19 pandemia, the the 25th Congress of the European Hematology Association (EHA) will be replaced by a virtual edition.

“ENROL: The European Rare Blood Disorders Platform” and “ERN-EuroBloodNet: Establishment of the European Network of Sickle Cell Disease Patients Organizations” will be presented next 14-16 May

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