Resources for families
When a family receives a diagnosis of retinoblastoma, it is normal to have doubts, fears and many questions. At La Nineta dels Ulls, we believe that clear and accessible information is also a form of care.
In this section, you will find materials designed especially for families: explanatory videos, practical resources, and content developed in collaboration with healthcare professionals to help you better understand the disease, the different treatment options, and the process your son or daughter may go through.
All content is written in simple, respectful and rigorous language, so you can learn at your own pace, refer back to it whenever you need to, and feel more supported at every stage of the journey.
Videos (In spanish):
What is retinoblastoma?
In this video, Dr Jaume Català Mora, coordinator of the Intraocular Tumour Unit at San Joan de Déu Hospital, explains in clear and accessible terms what retinoblastoma is — the most common eye tumour in children — and what families need to know.
Dr Català discusses the most common signs, how retinoblastoma is diagnosed and why a multidisciplinary approach is important for its treatment and follow-up.
Intrarterial Chemotherapy:
In this video, Dr Teresa Sola, an interventional neuroradiologist, explains intra-arterial chemotherapy, one of the most innovative therapies for treating retinoblastoma.
The video clearly explains how this treatment is carried out.
Anesthesia:
In this video, Dr Dolors Molies, a leading anesthesiologist specialising in retinoblastoma at the Hospital San Joan de Déu, explains clearly and in detail how the anesthesia process is carried out in children with retinoblastoma, helping families understand what to expect during medical procedures.
Anesthesia is part of many treatments and tests related to retinoblastoma (such as examinations, procedures, or diagnostic techniques), and this video explains how it is planned, what aspects must be taken into account, and how each child is cared for throughout the process.
Genetics:
In this video, Dr Diana Salinas, genetic counsellor at the San Joan de Déu Hospital, explains the genetic mutations that cause retinoblastoma, how they occur and what implications they have for the development of the disease and long-term follow-up.
Enucleation:
Dr Ester Casas, coordinator of the Congenital Eyelid and Eye Development Disorders Unit at Sant Joan de Déu Hospital, explains what enucleation is—the surgery to remove the eye in children with retinoblastoma—when it is considered necessary, and how it is performed.
It also addresses what families can expect before and after the procedure and how this procedure forms part of the comprehensive treatment of retinoblastoma, with the aim of protecting the health and well-being of children.
Follow-up:
In this video, Dr María Genoveva Correa Llano, a pediatric oncologist, explains how retinoblastoma is medically monitored after diagnosis and during the different stages of treatment.
Monitoring retinoblastoma is a fundamental part of the process, as it allows the progression of the disease to be controlled, possible changes to be detected early, and the long-term well-being of the child to be ensured. The video addresses common concerns that families have: the frequency of check-ups, the tests that are performed, and the importance of ongoing monitoring.
Round-Tables:
This section contains videos of the various round tables held during the conference for patients, families and experts. These are longer videos that offer a more comprehensive overview of the topics discussed, as they include the participation of different experts in each field, as well as the active participation of families in the debate.
Retinoblastoma follow-up:
In this video, Dr Cristina Gutiérrez, head of the Radiation Oncology Department at Hospital del Mar; Dr Genoveva Correa, pediatric oncologist; and Dr Jaume Català , coordinator of the Pediatric Intraocular Tumours Unit at Hospital San Joan de Déu, discuss the long-term follow-up of patients with retinoblastoma.
Retinoblastoma follow-up 2:
In this video, Dr Mònica Salinas, genetic counsellor at ICO; Dr Gala Serrano, oncologist at ICO; Dr Estela Carrasco, geneticist at HVH; Dr Miquel Macià, oncologist at ICO; and Dr Genoveva Correa, oncologist, discuss long-term follow-up and explain a new multidisciplinary follow-up model that will be implemented at ICO Bellvitge for retinoblastoma patients.
Challenges in retinoblastoma:
In this video, Dr Estela Carrasco, genetic counsellor at HVH; Dr Dolors Molies, anesthesiologist at HSJD; Dr Jaume Català, ofthalmologist at HSJD; Dr Joan Prat, surgeon at HSJD and president of Ocularis; and Joan Carles Castillo, psychologist at the La Nineta dels Ulls Foundation, address the challenges of early detection, challenges related to prostheses, and challenges in improving the well-being of patients and their families.
