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Published on EuroBloodNet's Edu YouTube channel: Educational videos for people living with SCD!!

Published on EuroBloodNet's Edu YouTube channel: Educational videos for people living with SCD!!

2021-04-23
Published on EuroBloodNet's Edu YouTube channel: Educational videos for people living with SCD!!

Videos of the SCD Patients' Educational Session at ASCAT 2020 are now published on the YouTube Educational Channel of the ERN, EuroBloodNet's Edu

Sickle Cell Disease patients and parents' patients Educational Session at the 15th Annual Sickle Cell and Thalassaemia Conference 2020 (ASCAT) is a joint project of ERN-EuroBloodNet, ASCAT, and BSH. Videos of the SCD Patients' Educational Session at ASCAT 2020 are now published on the Educational Channel of the ERN, EuroBloodNet’s Edu YouTube Channel.

You can find two available playlists:

1. Full sessions divided by topics

2. Patients Testimonies divided by topics

Topics:

In detail, those are the sessions included in the ASCAT 2020 SCD Patients Educational Program.

  • Living with SCD and coping with COVID19 Pandemic Outbreak, (access to hospitals, management of crisis, receiving information about Covid-19).
  • The participations of SCD patients to Research and Peer Reviewing.
  • Three panels. One "meet the experts" and two "meet the patients' session". Patients have addressed dedicated questions to physicians and physicians and young patients have addressed questions to adult patients.
  • Living with SCD as pediatric or young adult patients.

This project has provided for the second year the perfect opportunity for people living with SCD to experience how important is to participate in Research's Agenda, while demonstrated that the medical profession is willing to change and listen to the patient voice.

49 people living with SCD have registered for the online educational session.

According to the ASCAT 2020 program, each session of the program was moderated by one healthcare professional and one person living with SCD. Educational topics had been identified by participants as being important for research at the 2019 ASCAT. In addition, topics had been prioritized by people affected as requiring more information from a EuroBloodNet Survey. The program was held online. All participants had opportunities to ask questions in chat and/or live.

You can find all those sessions and the patients' testimonies on the EuroBloodNet EDU YouTube Channel.