ERN-EuroBloodNet SCD Patient Educational Session at ASCAT October 2023
The SCD patient trainings organised by the ERN-EuroBloodNet at the ASCAT arrived at the fifth edition!
In October 2023 (between the 25th and the 29th) at the ASCAT (Annual Sickle Cell and Thalassemia Conference), it was held the annual training the ERN organizes for patients' representatives (patients or caregivers). As in previous editions, the hybrid formula of the patients’ training was confirmed. On the 16th and 17th of October, the ERN hosted on a Virtual Platform two closed sessions dedicated to transition.
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María del Mar Mañú Pereira (ERN-EuroBloodNet Scientific Director & ENROL Coordinator) and Mariangela Pellegrini (Educational & Patients Program Manager) were involved in the different actions organized on behalf of the ERN-EuroBloodNet.
On the first day, we discussed the discrepancy that sometimes exists in the quality of life patients' perception and the important topic of how to build autonomy. During the second session, an open dialogue was performed focused on the transition, from a successful experience to the opposite, a traumatic experience. Trainings were done in coordination with expert physicians and psychologists too.
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At the ASCAT, in London, about 20 patient’ delegates From the UK, Bahamas, USA, RD Congo, Africa, Ireland, France, Germany, Italy, Spain, Portugal, and The Netherlands participated in the ERN dedicated training.
On the 26th of October, a co-joint panel with representatives of the SCD Lancet Commission, a patient advocate, and the ERN for talking about the global strategy for SCD from patients' point of view in the plenary of the ASCAT. Education, Research, and Policy are the selected key actions.
On the 27th of October, the scientific director of the ERN-EuroBloodNet María del Mar Mañú Pereira a workshop on the application of Artificial Intelligence (AI) for SCD. What is Artificial Intelligence and how it is used for SCD? One important outcome is that patients do trust to share their data for AI applications within the scope of research.
On the 28th of October, we explored patient-doctor dynamics to understand how to build assertiveness with the help of two actors personifying running situations for SCD as entering at the urgency or asking for changing pain killers treatment plan. Videos of this experience will be in the forthcoming published.
For the sixth edition, the ERN-EuroBloodNet is planning to focus on transition. More information will come!