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The Topic on Focus on AA and PNH for patients and their families will start next 23rd November!

The Topic on Focus on AA and PNH for patients and their families will start next 23rd November!

2022-10-18
The Topic on Focus on AA and PNH for patients and their families will start next 23rd November!

A new comprehensive program organized with patients associations.

ERN-EuroBloodNet Topic on Focus on aplastic anemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH) for Patients and their Families is coordinated in collaboration with the following patients associations: PNH Support (focused on PNH represented by Maria Piggin, ePAG of the ERN-EuroBloodNet) and Lichterzellen (focused on AA and PNH and represented by Pascale Olivia Burmester) and Eurordis.

It aims to disseminate very topical areas related to AA and PNH among the patient community in order to give visibility to the medical services available in Europe, recent quality of life cutting-edge advances in the field of this very rare condition and their treatment options.

PROGRAM

  • Nine sessions, once per month on a Wednesday, from 5.30 pm to 7 pm (CET), starting from November 2022.
  • 25 min of presentation + 35 min for questions (written in the chat)
  • On Zoom
  • Program will be recorded and part of the ERN-EuroBloodNet Edu YouTube channel

Each session is moderated by a duo of an expert physician and a patient representative, who host the session together. First, the physician introduces the topic and shares clinical knowledge. The patient representative ensures that the information provided is relevant to patients and also highlights which are the key crucial concepts for patients to the expert and asks for clarification of these for the webinar audience. 

Question&Answer session will be moderated by Maria Piggin, PNH Support and  PNH Global Alliance) and Pascale Olivia Burmester (Lichterzellen and PNH Global Alliance)

Date and speakers' names will be soon confirmed.

  1. Understanding Aplastic Anemia 
  2. Understanding PNH
  3. Treatment of Aplastic Anemia
  4. Treatment of PNH
  5. Connection between Aplastic Anemia and PNH
  6. What effect does Aplastic Anemia and PNH have on my life?
  7. Pregnancy for Aplastic Anemia and PNH and PNH
  8. Life after Bone Marrow Transplants for Aplastic Anemia and PNH
  9. Psychological impact and well-being in AA and PNH

You are able to sign up to the full programme of webinars or to each one individually! Visit the dedicated section for detailed information.