During the fourth edition for the ERN-EuroBloodNet SCD Patient Educational Program at ASCAT (Annual Sickle Cell and Thalassemia Conference) a co-joint educational program for SCD patients and their families have been developed.
The educational program of the 2022 October edition has been organized in a hybrid way:
- a patient therapeutic training for people living with SCD in an online format held the week before the launch of the ASCAT Congress in London. This virtual format has been chosen because the participants of past years' editions expressed this preference over the onsite possibility;
- and a delegation of patient advocates participating in the ASCAT face-to-face meeting in London from the 20th to the 22nd of October 2022. They will participate to advocate trainings in London, following the scientific congress representing patients community' voice and presents the results of the full educational program at the closing ASCAT closing plenary in front of all the ASCAT public that includes consultants and specialist psychologists, nurses, scientists and all relevant experts.
The online program was structured in 3 sessions:
The onsite program will be on developing advocate skills on:
- Building assertiveness on the relationship with physicians
- Patient Reported Outcomes Measurements
- How to share knowledge at local level among the patients community
In addition, the group brainstormed on actions in collaboration with the ERN-EuroBloodNet.
All the online sessions were recorded and videos are publicly available at the ERN-EuroBloodNet’ EDU YouTube Channel.
