On the occasion of World Retinoblastoma Awareness Week, Fundació La Nineta dels Ulls organised several awareness, educational and support initiatives throughout the week with the aim of raising awareness about retinoblastoma and highlighting the importance of early diagnosis.
The commemoration began with the announcement of the 4th edition of the NDUTalks, a very special event where people with retinoblastoma and families shared their personal experiences, creating a space filled with listening, emotion and hope for all participants.
Throughout the week, the Foundation shared educational videos created by professionals from different fields related to retinoblastoma, addressing medical, emotional, social and technological aspects connected to the disease.
Among the featured content, ocularist Àlex Gutiérrez, from ART-LENS, presented the process of creating and personalising ocular prostheses, an essential part of life for many children who have undergone enucleation. In addition, psycho-oncologists Marta Campdepadrós and Mariana Tau, from the Pediatric Cancer Center, explained the main psychosocial challenges that may arise throughout the disease process and the emotional impact it can have on both children and their families.
The week also included the testimony of Charlotte, a retinoblastoma patient and ocular prosthesis wearer, who shared her personal experience with great honesty and courage. Charlotte and her family actively collaborate with the Foundation and participated in the creation of the prosthesis accessory for the Nixi-retinoblastoma Kit, even contributing the idea of a rainbow prosthesis.
In the field of research and innovation, the Foundation also highlighted the work being carried out by Dr. Tapuwa Banguira and Shirley Mavale at Maputo Central Hospital in Mozambique. The professionals are capturing ocular images of paediatric patients to continue training the prototype of the mobile application developed by the Foundation, designed to automatically detect leukocoria, the main symptom of retinoblastoma.
Finally, Estela Carrasco, genetic counsellor at Vall d’Hebron Hospital, explained the importance of genetic counselling for adolescents and adults with retinoblastoma, emphasising the value of this information in guiding medical, family and follow-up decisions.
Fundació La Nineta dels Ulls would like to sincerely thank all the people, professionals, families and organisations who participated in this World Retinoblastoma Awareness Week.
Together, we continue working to raise awareness about retinoblastoma, promote early diagnosis and provide greater support to affected families.
