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COVID-19

COVID-19 and 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 pandemic and limited literature so far, especially in some countries.

At this crucial stage, efforts are being devoted by different initiatives for the generation of documents with indications for the clinical care of these patients. Find below some of the documents produced with the participation of EuroBloodNet members, including language and target (health professionals or patients). List will be updated as further information is available:

Red Blood Cell disorders 

  • For professionals (EN) – “Pre-prints” accepted publications for the management of patients with Sickle Cell Disease, Thalassaemia and G6PD compiled by Filière de santé maladies constitutionnelles rares du globule rouge et de l'érythropoïèse (MCGRE)

Hemoglobinopathies: Sickle Cell Disease and Thalassemia

Sickle Cell Disease

Thalassemia

Glucose-6-phosphate dehydrogenase (G6PD) deficiency

Indications linked to complications that may affect patients with Red Blood Cell Disorders

Bone Marrow Failures

Bleeding-Coagulation disorders

Hemophilia

The World Federation of Hemophilia (WFH) is committed to ensuring the provision of accurate, up to date information that may affect the community of people living with hemophilia and other rare blood disorders. 

In this context, the WFH has recently published the following recommendations and indications: 

  • For professionals (EN, FR, ES) COVID-19 (coronavirus disease 2019) pandemic caused by SARS-CoV-2: practical recommendations for hemophilia patients -From the World Federation of Hemophilia Medical Advisory Board (MAB) and the WFH Medical Advisory Board and the WFH Coagulation Products Safety, Supply and Access Committee (CPSSAC) - Including recommendations:

    • For hemophilia patients currently treated with standard or extended recombinant half-life FVIII or FIX concentrates, FEIBA, FVIIa, or emicizumab
    • For patients treated with plasma-derived FVIII/FIX
    • For patients currently in clinical trials (excluding post-marketing trials)
    • For patients who are scheduled to be soon enrolled in a trial testing a new treatment
    • Specific measures to reduce exposure of SARS-CoV-2, the virus that causes COVID-19 in patients with hemophilia
    • Specific measures in case of hospital admission of a bleeding disorders patient with COVID-19 infection

Find all the updated information at World Federation of Hemophilia (WFH) website

Constitutional or acquired hemorrhagic disorders

Atypical hemolytic-uremic syndrome & Thrombotic thrombocytopenic purpura

Oncological Diseases: Lymphoid and Myeloid malignancies

Lymphoid Malignancies

Myeloid malignancies

Other important recommendations for Rare Hematological Disease patients

Other links for Rare Disease community

Euro Blood Net