The porqueViven Foundation will be present at the SECPAL 2025 Congress, which will be held in Zaragoza on September 26 and 27 in Zaragoza. "Psychosocial intervention in lucodystropia: the role of the third sector" is the title of the paper to be presented by Leonor Peinado, social worker and Raquel Gª Ramo, psychologist, both representatives of the Foundation because Live in Aragon. In this presentation, developed together with other professionals of recognized prestige, the importance of the comprehensive approach in pediatric palliative care is highlighted.
Madrid, September 22, 2025 – On September 26 and 27, the XV International Conference of the Spanish Society of Palliative Care and the VII Conference of the Aragonese Society of Palliative Care (CUSIRAR) will be held in Zaragoza. Both are part of the SECPAL 2025 Congress, an unmissable event for professionals in the palliative care environment.
Mónica Cantón de Celis, project director CAPPI, the comprehensive pediatric palliative care center built by the Foundation because Live will participate in the round table "Third Sector and paediatric palliative care" together with Carmen Yélamos Agua, Beatriz Arce Aguilar and Olga Melida. Mónica will explain the importance of the third sector to complement public health services and thus guarantee comprehensive care for children with incurable diseases and their families.
The presence of because Live in a benchmark Congress
The Foundation's Assistance because Live to specialized congresses such as SECPAL reinforces its role in the Generation of knowledge and awareness around paediatric palliative care . On this occasion, the participation is focused on Aragon, a region where the Foundation collaborates with the Miguel Servet Children's Hospital to care for children and families living with serious and highly complex diseases.
💬 "Being present at this congress means giving visibility to the reality of families and the work of the third sector in comprehensive accompaniment. Sharing our experience is key to continue building support networks."
—Leonor Peinado Barranco, social worker of F undation because Live Aragon
Social intervention in leukodystrophy: the role of the third sector
The communication signed by Leonor Peinado Barranco, Raquel García Ramo, together with the D Ra. Victoria Caballero Pérez, Fátima Parra Plantagenet-White, Pilar Pérez Roy and Virginia Moreno García Addresses The case of Juan , a 2-year-old, 8-month-old boy diagnosed with Late Infantile Metachromatic Leukodystrophy . The intervention of the pediatric palliative care team included:
- Key Resource Management (disability, dependency, social rent and schooling)
- Inclusion in Therapeutic leisure (equine therapy, canine therapy, music therapy)
- Individualized psychological therapy for the primary caregiver and the older sibling
- Progressive integration into a peer-to-peer network , promoting the emotional well-being of the family
💬 “ "This case reflects the importance of early and coordinated intervention, which is not limited only to the clinical but also encompasses the social, emotional and family dimension of the disease."
—Raquel García Ramo, psychologist at F undation because Live Aragon
To make visible the importance of paediatric palliative care
The testimony shared at SECPAL 2025 shows the need for comprehensive care models where families receive health, psychosocial and community support. Paediatric palliative care is, in this sense, an example of the humanisation of medicine and a right that should be guaranteed for all children with incurable diseases in Spain.
From the Foundation because Live We reaffirm our commitment: that no family faces this path alone and that paediatric palliative care is recognised as a universal right.
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