We had the honor of participating in the 3rd Congenital Anemia Patient Conference held at the Barceló Occidental Hotel in Murcia. This event brought together healthcare professionals, patients, and families to share scientific advancements, personal experiences, and future perspectives regarding these rare diseases.

The conference was organized by the Region of Murcia through its Department of Health, in collaboration with the IMIB (Murcia Institute of Biosanitary Research), the Foundation for Health Training and Research of the Region of Murcia (FFIS), and the Murcia Health Service.

The opening ceremony featured remarks by Mª Fuensanta Martínez Lozano, Director of the FFIS, and Dr. Vanesa Roldán Schilling, Head of the Hematology Department at the Virgen de la Arrixaca University Hospital.

One of the most moving moments was the testimony of Mr. Secundino Sacristán, a beta-thalassemia patient and president of ALHETA, who emphasized the importance of patient associations in coping with the disease. Another highlight was the heartfelt speech from Isabel Melero, a relative of a patient, who shared a valuable perspective from the family’s point of view.

We also had the opportunity to hear from María Dolores Muñoz Navarro, a patient with pyruvate kinase deficiency, who shared her inspiring journey “from patient to researcher” as a current higher education student in laboratory studies.

The scientific segment of the conference featured a round table on hematopoietic transplantation, gene therapy, and other advancements, with presentations by Dr. Miguel Blanquer, Dr. Eduardo Salido, and Dr. Ana Belén Pérez, researchers from the hematopoietic transplant group at IMIB.

This gathering was made possible thanks to the sponsorship of INVERSUS and the support of collaborating entities such as Salud 21, the Spanish Group for Erythropathology, ALHETA, and ASAFE.