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Diseases groups

Rare hemorrhagic disorder due to a constitutional platelet anomaly

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Patients organizations that work in collaboration of ERN-EuroBloodNet to improve the quality of life of patients living with diseases are included in this disease group.

Discover the Guidelines & other CDMTs of the ERN-EuroBloodNet repository that target this disease group.

Repository of educational material produced in the ERN-EuroBloodNet focused on this disease group.

Repository of educational material produced in the ERN-EuroBloodNet focused on this disease group.

Discover the research developed in the ERN-EuroBloodNet targeting this disease group.

List of the ERN-EuroBloodNet projects and links focused on this disease.

All the diseases included in this disease group are listed below!

Find further information relevant to this disease group produced by external institutions.

Reference Centers & Experts
Patients Organizations supporting group
Guidelines & other CDMTs
Education Health Professionals
Education Patients
Research & Publications
Ongoing projects
Diseases covered
External useful links

Education Health Professionals

Past webinars

Data standardization and linkage (Standards & Federation)

04/10/2023 12:30
Speakers: Silvia Uribe Mayoral, Vincent Planat, Davide Piscia
Target: Patients, Health professionals, Patients organizations
Subnetworks:Lymphoid malignancies, Myeloid malignancies, Red blood cell defects
Disease Groups:Transversal

Pathogenesis of inherited thrombocytopenia

20/09/2023 17:00
Speakers: Hana Raslova
Target: Health professionals
Subnetworks:Bleeding - Coagulation disorders
Disease Groups:Rare hemorrhagic disorder due to a constitutional platelet anomaly

Suspecting inherited thrombocytopenia

11/10/2023 17:00
Speakers: Maria Luisa Lozano
Target: Health professionals
Subnetworks:Bleeding - Coagulation disorders
Disease Groups:Rare hemorrhagic disorder due to a constitutional platelet anomaly

MYH9-related disease

07/02/2024 17:00
Speakers: Jose Rivera Pozo, Maria Luisa Lozano Almela
Target: Health professionals
Subnetworks:Bleeding - Coagulation disorders
Disease Groups:Rare hemorrhagic disorder due to a constitutional platelet anomaly

Upcoming webinars

Constitutional thrombocytopenia and bleeding risk

05/06/2024 17:00
Speakers: Paolo Gressele
Target: Health professionals
Subnetworks:Bleeding - Coagulation disorders
Disease Groups:Rare hemorrhagic disorder due to a constitutional platelet anomaly

Videos

Preceptorships

Onsite trainings

Education Patients

Past webinars

PROMs and PREMs in ENROL

01/03/2023 17:00
Target: Patients
Subnetworks:Bleeding - Coagulation disorders, Bone marrow failure, Hemochromatosis and other iron disorders, Histiocytic Disorders, Lymphoid malignancies, Myeloid malignancies
Disease Groups:Transversal

Data standardization and linkage (Standards & Federation)

04/10/2023 12:30
Speakers: Silvia Uribe Mayoral, Vincent Planat, Davide Piscia
Target: Patients, Health professionals, Patients organizations
Subnetworks:Lymphoid malignancies, Myeloid malignancies, Red blood cell defects
Disease Groups:Transversal

Upcoming webinars

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Videos

Onsite trainings

Research & Publications

Observational study

Clinical trial

Publication

Diseases covered

  • Rare hemorrhagic disorder due to a constitutional thrombocytopenia
  • Syndromic constitutional thrombocytopenia
  • Dense granule disease
  • Isolated constitutional thrombocytopenia
  • Isolated hereditary giant platelet disorder
  • Rare hemorrhagic disorder due to a qualitative platelet defect

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