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Diseases groups

Rare hemorrhagic disease due to constitutional coagulation factors defects (Other than Hemophilia and Von Willebrand disease)

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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.

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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.

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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.

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

Upcoming webinars

No entries found

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

No entries found

Videos

Onsite trainings

Research & Publications

Observational study

Clinical trial

Publication

Diseases covered

  • Multiple sclerosis-ichthyosis-factor VIII deficiency syndrome
  • Congenital factor V deficiency
  • Congenital fibrinogen deficiency
  • Congenital alpha2-antiplasmin deficiency
  • Congenital factor XIII deficiency
  • Congenital factor XI deficiency
  • Congenital plasminogen activator inhibitor type 1 deficiency
  • Congenital high-molecular-weight kininogen deficiency
  • Congenital prekallikrein deficiency
  • Combined deficiency of factor V and factor VIII
  • Congenital vitamin K-dependent coagulation factors deficiency
  • Congenital factor VII deficiency
  • Congenital factor II deficiency
  • Congenital factor X deficiency
  • Hereditary combined deficiency of vitamin K-dependent clotting factors
  • Hemorrhagic disease due to alpha-1-antitrypsin Pittsburgh mutation
  • East Texas bleeding disorder
  • Thrombomodulin-related bleeding disorder
  • Acquired prothrombin deficiency