Psychosocial impact at the time of a rare disease diagnosis.

Autor: Benito-Lozano J; Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III (ISCIII), Madrid, Spain.; Universidad Nacional de Educación a Distancia (UNED), Madrid, Spain., Arias-Merino G; Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III (ISCIII), Madrid, Spain., Gómez-Martínez M; Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III (ISCIII), Madrid, Spain., Arconada-López B; Spanish Federation of Rare Diseases (FEDER), Federación Española de Enfermedades Raras, Madrid, Spain., Ruiz-García B; The State Reference Center for Assistance to People Living with Rare Diseases and their Families (Creer), Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras y sus Familias, dependiente del IMSERSO, Burgos, Spain., Posada de la Paz M; Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III (ISCIII), Madrid, Spain.; Undiagnosed Diseases Network International (UDNI), Madrid, Spain., Alonso-Ferreira V; Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III (ISCIII), Madrid, Spain.; Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER), Madrid, España.

Publikováno v: PloS one [PLoS One] 2023 Jul 28; Vol. 18 (7), pp. e0288875. Date of Electronic Publication: 2023 Jul 28 (Print Publication: 2023).

Meeting abstracts from the 12th European Conference on Rare Diseases and Orphan Products.

Publikováno v: Orphanet Journal of Rare Diseases. 12/5/2024, Vol. 19 Issue 1, p1-27. 27p.

PROCESO DE ELABORACIÓN DE UN CUESTIONARIO DE AUTOINFORME SOBRE PROBLEMAS CLÍNICOS COOCURRENTES AL AUTISMO SIN DISCAPACIDAD INTELECTUAL ASOCIADA.

Autor: DANÉS HENRÍQUEZ, Marta¹ marta.danes@estudiante.uam.es, BELINCHÓN CARMONA, Mercedes¹ mercedes.belinchon@gmail.com, SOTILLO MÉNDEZ, María¹ maria.sotillo@uam.es

Publikováno v: Siglo Cero. jul-sep2024, Vol. 55 Issue 3, p93-135. 43p.

Embracing the unknown: investigating medical communication around uncertainty and the implications on patient and family well-being.

Autor: Devisetti, Leisha¹ (AUTHOR) leishadevisetti@gmail.com

Publikováno v: Orphanet Journal of Rare Diseases. 2/26/2024, p1-4. 4p.

Obsessive Compulsive Inventory-Child Version (OCI-CV) in a Spanish community sample of children and adolescents.

Autor: Rosa-Alcázar AI; Universidad de Murcia., Ruiz-García B, Iniesta-Sepúlveda M, López-Pina JA, Rosa-Alcázar Á, Parada-Navas JL

Publikováno v: Psicothema [Psicothema] 2014 May; Vol. 26 (2), pp. 174-9.