This year the ERN-EuroBloodNet thought about a hybrid formula for the ERN-EuroBloodNet SCD Patients Educational Session at the ASCAT 2022: an online Patient Therapeutic Educational Session and an Advocacy training onsite. If you want to know more about it, read here the dedicated article.
For the parallel sessions of the ASCAT 2022 addressed to patients' advocacy, we had the participation of 12 patients representatives coming from different countries: France metropole and Overseas, Italy, Spain, Portugal, Ireland, Sweden, Germany, UK, Australia, Netherlands, Zambia.
The three trainings were about:
For the next year, it has been proposed to explore again the communication between physicians and patients but invite more physicians to take part in the exercise. In addition, a suggestion raised was a training on transitions for young adult and their families held by adult SCD Patients, and finally a plenary "meet the patients" and "meet the expert" when physicians can ask questions to patients and viceversa.