La Filière de Santé Maladies Rares TÊTECOU: Améliorer le parcours de soins, la formation et la recherche des malformations de la tête, du cou et des dents. (French)

Autor: de Chalendar, Myriam, Friedlander, Lisa, Leboulanger, Nicolas

Publikováno v: Médecine Sciences; jan2024, Vol. 40 Issue 1, p30-34, 5p

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Bridging the Gap between Health and Social Care for Rare Diseases: Key Issues and Innovative Solutions.

Autor: Castro R; EURORDIS-Rare Diseases Europe - European Organisation for Rare Diseases, 96 Rue Didot, 75014, Paris, France. raquel.castro@eurordis.org., Senecat J; EURORDIS-Rare Diseases Europe - European Organisation for Rare Diseases, 96 Rue Didot, 75014, Paris, France., de Chalendar M; French National Health Network for Head, Neck and Teeth Rare Diseases - Filière de Santé, Maladies Rares TETECOU, Hôpital Necker - Enfants Malades, Paris, France., Vajda I; Dutch Genetic Alliance VSOP - Vereniging Samenwerkende Ouder-en Patiëntenorganisaties, Soest, The Netherlands., Dan D; Romanian National Alliance for Rare Diseases RONARD - Alianta Nationala Pentru Boli, Rare Romania, Zalau, Romania., Boncz B; Hungarian National Alliance for Rare Diseases HUFERDIS, Budapest, Hungary.

Publikováno v: Advances in experimental medicine and biology [Adv Exp Med Biol] 2017; Vol. 1031, pp. 605-627.