This is the fourth edition for the ERN-EuroBloodNet SCD Patient Educational Program at ASCAT (Annual Sickle Cell and Thalassemia Conference). This project is a co-joint educational program for SCD patients and their families.
This year the Educational Program has been organised in a Hybrid way: a patient therapeutic training for people living with SCD in on 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 foreseen online program is structured in 3 sessions on:
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 will brainstorm on actions in collaboration with the ERN-EuroBloodNet.
Finally, the session will be recorded and video will integrate the e-learning environment of the ERN-EuroBloodNet (YouTube Channel and e-learning platform). If you wish to have a look at 2020's experience, you can find the videos here on our YouTube Channel!
If you wish to participate, please contact: firstname.lastname@example.org