19th ASCAT Conference in London puts patients at the heart of scientific discourse through ERN-EuroBloodNet
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
From October 2nd to 5th, 2024, London hosted the 19th Annual Scientific Conference organized by the Academy for Sickle Cell & Thalassaemia (ASCAT), in collaboration with the British Society for Haematology and the European Hematology Association (EHA). The event, which brought together healthcare professionals, researchers and patient representatives, was supported by ERN-EuroBloodNet and other key stakeholders. It served as a crucial platform for exchanging insights and advancing understanding in the field of rare blood disorders.
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.
The discussions throughout the conference facilitated meaningful exchanges between patients, caregivers, and healthcare professionals. This collaborative approach underscores the event's commitment to prioritizing patient perspectives, a theme that has grown stronger since the sessions' inception in 2019.
Special recognition is to be given to a dedicated group of patient representatives and healthcare professionals, including Noemi Roy, Baba Inusa, Raffaella Colombatti, Mariane de Montalembert, Béatrice Gulbis, María del Mar Mañú Pereira, and Subarna Chakravorty, for their continued efforts. Special thanks extended to Gaby Medin and Kofi Anie for their contributions.
The ASCAT conference remains a pivotal event in fostering patient-centered dialogue within the scientific community, with the shared goal of improving research, policy, and care for individuals with sickle cell disease.