The ERN-EuroBloodNet annual event at ASCAT highlights the crucial role of patient voices, especially youth advocates, in shaping the future of sickle cell transition care.
For the sixth consecutive year, Mariangela Pellegrini from the ERN-EuroBloodNet, coordinated special sessions focused on sickle cell disease (SCD) patients. These sessions have become a vital space for patients to share their personal experiences, ensuring their voices are central in scientific discussions. This year's event was particularly notable for the involvement of teenagers and young adults, whose participation shed light on the specific needs of younger patients, especially in terms of transition care.
The inclusion of young advocates offered a fresh perspective on the challenges they face in managing their health, reinforcing the importance of incorporating patient insights in shaping future care models, policy development, and advocacy efforts.
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