Rare diseases (RD) affect children, adolescents, and their families infrequently, but with a
significant impact. The diagnostic odyssey undertaken as part of having a child with RD is …

The challenges imposed by climate change and the limited nature of resources generate
paradigm shifts at the level of economic, social, and environmental policies and strategies …

Rare diseases produce multiple impacts for the people who suffer from them, but they also
have repercussions for their families, education and healthcare. The objective of this study is …

Pediatric palliative care (PPC) programs are essential in encompassing not only the affected
children but also their family system and the healthcare and educational professionals …

Partiendo del hecho incontestable de que una enfermedad en la infancia significa una
experiencia desconcertante para toda la familia, el presente artículo se centra en destacar …

Living with a long-term medical condition is associated with heightened risk for mental
health and psychosocial difficulties, but further research is required on this risk for children …

In contemporary cities, justice stands as a paramount concern, integral to their fabric and
functionality. Just urban land use planning (JULUP) is one of the main topics in urban land …

Background Ågrenska, a Swedish national centre for rare diagnoses and health conditions,
has arranged courses for families of children with rare diagnoses for over thirty years, and …

Rare diseases are usually complex syndromes, which sometimes cause extensive
functional impairments affecting everyday life. The number of rare diseases and of people …

This study explores the perception of social and educational quality of life in minors with rare
diseases (RDs). Two meta-analyses were performed, applying the random effects model …