ERN-EuroBloodNet strengthens patient-centred focus at ASCAT 2025!

For the seventh consecutive year the ERN-EuroBloodNet coordinated special sessions focused on sickle cell disease (SCD) patients.

ERN-EuroBloodNet played a key role at ASCAT 2025, leading with RADeep Network, a three-day educational programme for patients focused on the intersection between sexual health and Sickle Cell Disease (SCD). These sessions have become a vital space for patients to share their personal experiences, ensuring their voices are central in scientific discussions.

Moreover, Mariangela Pellegrini, on behalf of the ERN-EuroBloodNet presented the results of a global survey developed in collaboration with the Sickle Cell Disease Lancet Haematology Commission and ASCAT, aiming to place experiences of people living with SCD at the center of public health priorities.

Sexual Health and Sickle Cell Disease: Patient Educational Sessions by ERN-EuroBloodNet

At ASCAT 2025, ERN-EuroBloodNet organised a three-day patient educational programme focused on sexual health and Sickle Cell Disease (SCD). An essential yet often under-addressed aspect of care.

Key points from the patient plenary:
·    Sexual health is a fundamental component of quality of life and remains an unmet need in SCD.
·    Participants highlighted the importance of open, stigma-free discussions on pain, intimacy, fertility, and emotional wellbeing.
·    Patients and caregivers called for sexual health to be integrated into care pathways, professional training, and research agendas.

ERN-EuroBloodNet sincerely thanks all patients and caregivers for their active participation, openness, and valuable input that will help inform future educational and policy activities. We also thank the teaching faculty for their expertise and contribution to this year's sessions:

· Marine Driessen - Obstetrics & Prenatal Diagnostics, Maternité Necker, Paris
· Martin Colard - Hematology, HULB, Brussels
· Kofi A. Anie - Psychologist, NHS, London
· Gabriela Medina - Psychologist, Gregorio Marañón Hospital, Madrid
· Elena Cassinerio & Giovanna Graziadei - Ospedale Maggiore Policlinico, Milan
· Noemi Roy - Hematologist, Oxford University

Together, these discussions represent a step forward in recognising sexual health as an integral part of comprehensive, patient-centred SCD care.

Patient-driven insights in Sickle Cell Disease: results from a Global survey informing public health strategies

Mariangela Pellegrini on behalf of the ERN-EuroBloodNet presented the results of a global survey developed in collaboration with the Sickle Cell Disease Lancet Haematology Commission and ASCAT, aiming to place experiences of people living with SCD at the center of public health priorities.

The survey engaged people living with Sickle Cell Disease (SCD), their families, and caregivers across the world, collecting perspectives on research, education, and policy.

Key insights:
·    Global consensus on the need to invest in innovative therapies, health professional training, and early screening.
·    Equitable access to curative treatments and recognition of SCD as a disability emerged as top priorities.
·    Participants emphasized the importance of addressing racial bias, psychosocial support, and care equity, particularly in low-resource settings.

These findings highlight the power of patient-driven evidence to shape advocacy, policy, and research for a fairer future in SCD care.

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.

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