Paroxysmal nocturnal hemoglobinuria |

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Use cases challenges: MDS, SCD and MM

27/09/2023 12:30

Speakers: Matteo Giovanni Della Porta, Sophie Wintrich, María del Mar Mañú Pereira, Raffaella Colombatti, Marina Martello

Target: Patients, Health professionals, Patients organizations

Subnetworks:Lymphoid malignancies, Myeloid malignancies, Red blood cell defects

Disease Groups:Myelodysplastic syndrome, Sickle cell disease and related diseases, 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

Data integration and analysis (Artificial Intelligence)

08/11/2023 12:30

Speakers: Gastone Castellani, Tiziana Sanavia, Patricia Alonso, Jacqueline Dubow

Target: Patients, Health professionals, Patients organizations

Subnetworks:Lymphoid malignancies, Myeloid malignancies, Red blood cell defects

Disease Groups:Transversal

BMF in Europe: Who Are The Actors?

27/06/2023 13:00

Speakers: Régis Peffault de Latour

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

Diagnosis of Bone Marrow Failure: inherited versus acquired in adult

08/02/2022 13:00

Speakers: Tim H. Brümmendorf

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

Management of inherited disorders outside transplantation

22/02/2022 13:00

Speakers: Francesca Fioredda

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

The New Constitutional Bone Marrow Failure Disorders

01/03/2022 13:00

Speakers: Thierry Leblanc

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

Place of Bone Marrow Transplantation in the Management of Inherited Disorders

15/03/2022 13:00

Speakers: Carlo Dufour

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

CLINICAL CASE: Constitutional Bone Marrow Failure

05/04/2022 13:00

Speakers: Camilla Frieri

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Rare acquired aplastic anemia (Other than PNH), Paroxysmal nocturnal hemoglobinuria

ROUND TABLE: Management of constitutional Bone Marrow Failure

12/04/2022 13:00

Speakers: Antonio M Risitano, Carlo Dufour, Régis Peffault de Latour, Camilla Frieri, Francesca Fioredda, Thierry Leblanc, Tim H. Brümmendorf

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

Acquired Aplastic Anemia: Place of Transplantation

26/04/2022 13:00

Speakers: Andrea Bacigalupo

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Rare acquired aplastic anemia (Other than PNH), Paroxysmal nocturnal hemoglobinuria

Acquired Aplastic Anemia: Place of Immunosuppression and Thrombopoietin (TPO) Agonists

10/05/2022 13:00

Speakers: Régis Peffault de Latour

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Rare acquired aplastic anemia (Other than PNH), Paroxysmal nocturnal hemoglobinuria

Acquired Aplastic Anemia: somatic mutations

31/05/2022 13:00

Speakers: Austin Kulasekararaj

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Rare acquired aplastic anemia (Other than PNH), Paroxysmal nocturnal hemoglobinuria

Acquired Aplastic Anemia: monitoring and long-term outcome

21/06/2022 13:00

Speakers: Beatrice Drexler

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Rare acquired aplastic anemia (Other than PNH), Paroxysmal nocturnal hemoglobinuria

CLINICAL CASE: Acquired Aplastic Anemia

28/06/2022 13:00

Speakers: Britta Höchsmann

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Rare acquired aplastic anemia (Other than PNH), Paroxysmal nocturnal hemoglobinuria

ROUND TABLE: Diagnosis and Management of Acquired Aplastic Anemia

05/07/2022 13:00

Speakers: Régis Peffault de Latour, Andrea Bacigalupo, Austin Kulasekararaj, Beatrice Drexler, Britta Höchsmann

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

Paroxysmal Nocturnal Hemoglobinuria: Natural history

13/09/2022 13:00

Speakers: Lucio Luzzato

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Rare acquired aplastic anemia (Other than PNH), Paroxysmal nocturnal hemoglobinuria

Hemolytic Paroxysmal Nocturnal Hemoglobinuria: standard of care

27/09/2022 13:00

Speakers: Flore Sicre de Fontbrune

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

Place of new complement blockers in the management of Hemolytic Paroxysmal Nocturnal Hemoglobinuria

11/10/2022 13:00

Speakers: Antonio M Risitano

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

CLINICAL CASE: Paroxysmal Nocturnal Hemoglobinuria

25/10/2022 13:00

Speakers: Morag Griffin

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

ROUND TABLE: Diagnosis and Management of Paroxysmal Nocturnal Hemoglobinuria

15/11/2022 13:00

Speakers: Antonio M Risitano, Carlo Dufour, Régis Peffault de Latour, Lucio Luzzato, Flore Sicre de Fontbrune, Morag Griffin

Target: Health professionals

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

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Webinar on Risk and Course of COVID-19 in AA and PNH patients, Including Vaccination Strategies

05/07/2022 17:00

Speakers: Maria Piggin, Pascale Olivia Burmester, Austin Kulasekararaj, Régis Peffault de Latour, Antonio M Risitano, Carlo Dufour, Corrado Girmenia

Target: Patients

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

Life after BMT for Aplastic Anemia and PNH

31/05/2023 17:30

Speakers: Edgar Jost, Pascale Burmester

Target: Patients

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

Pregnancy for Aplastic Anemia and PNH

03/05/2023 17:30

Speakers: Britta Höchsmann, Alex Naylor

Target: Patients

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

What effect does Aplastic Anemia and PNH have on my life?

19/04/2023 17:30

Speakers: Jens Panse, Maria Piggin

Target: Patients

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

Connection between Aplastic Anemia and PNH

22/03/2023 17:30

Speakers: Carlo Dufour, Pascale Burmester

Target: Patients

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

Treatment of PNH

08/02/2023 17:30

Speakers: Régis Peffault de Latour, Maria Piggin

Target: Patients

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria

Understanding PNH

14/12/2022 17:30

Speakers: Flore Sicre de Fontbrune, Ulrike Göbel

Target: Patients

Subnetworks:Bone marrow failure

Disease Groups:Paroxysmal nocturnal hemoglobinuria

ENROL: Networking on European Registries in Rare Hematological Disorders

15/02/2023 17:00

Speakers: María del Mar Mañú Pereira, Loris Brunetta

Target: Patients

Subnetworks:Bleeding - Coagulation disorders, Bone marrow failure, Hemochromatosis and other iron disorders, Histiocytic Disorders, Lymphoid malignancies, Myeloid malignancies

Disease Groups:Transversal

How ENROL Supports Clinical Research

22/02/2023 17:00

Speakers: Béatrice Gulbis, Maria Piggin

Target: Patients

Subnetworks:Bleeding - Coagulation disorders, Bone marrow failure, Hemochromatosis and other iron disorders, Histiocytic Disorders, Lymphoid malignancies, Myeloid malignancies

Disease Groups:Transversal

PROMs and PREMs in ENROL

01/03/2023 17:00

Speakers: Mariangela Pellegrini, Jacqueline Dubow

Target: Patients

Subnetworks:Bleeding - Coagulation disorders, Bone marrow failure, Hemochromatosis and other iron disorders, Histiocytic Disorders, Lymphoid malignancies, Myeloid malignancies

Disease Groups:Transversal

Use cases challenges: MDS, SCD and MM

27/09/2023 12:30

Speakers: Matteo Giovanni Della Porta, Sophie Wintrich, María del Mar Mañú Pereira, Raffaella Colombatti, Marina Martello

Target: Patients, Health professionals, Patients organizations

Subnetworks:Lymphoid malignancies, Myeloid malignancies, Red blood cell defects

Disease Groups:Myelodysplastic syndrome, Sickle cell disease and related diseases, 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

Data integration and analysis (Artificial Intelligence)

08/11/2023 12:30

Speakers: Gastone Castellani, Tiziana Sanavia, Patricia Alonso, Jacqueline Dubow

Target: Patients, Health professionals, Patients organizations

Subnetworks:Lymphoid malignancies, Myeloid malignancies, Red blood cell defects

Paroxysmal nocturnal hemoglobinuria(PNH)

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