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The Topic on Focus on AA and PNH for patients and their families will start in November

The Topic on Focus on AA and PNH for patients and their families will start in November

2022-08-26
The Topic on Focus on AA and PNH for patients and their families will start in November

A new comprehensive program organized with patients associations will be launched in next months!

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

  • Six 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.

Understanding Aplastic Anemia

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