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The first European consensus on principles of management for achondroplasia

2021 . Cormier-Daire, Valerie | AlSayed, Moeenaldeen | Ben-Omran, Tawfeg | de Sousa, Sérgio Bernardo | Boero, Silvio | Fredwall, Svein O. | Guillen-Navarro, Encarna | Irving, Melita | Lampe, Christian | Maghnie, Mohamad | Mortier, Geert | Peijin, Zagorka | Mohnike, Klaus

Parent–child-agreement on health-related quality of life and its determinants in patients born with Esophageal Atresia: a Swedish–German cross-sectional study

2021 . Witt, Stefanie | Dellenmark-Blom, Michaela | Kuckuck, Susanne | Dingemann, Jens | Abrahamsson, Kate | Dingemann, Carmen | Chaplin, John Eric | Ure, Benno | Bullinger, Monika | Gatzinsky, Vladimir | Jönsson, Linus | Quitmann, Julia Hannah

Involvement of mental health professionals in the treatment of tuberous sclerosis complex–associated neuropsychiatric disorders (TAND): results of a multinational European electronic survey

2021 . Waltereit, Robert | Beaure d’Augères, Guillaume | Jancic, Jasna | Kingswood, John Chris | Koleva, Maya | Marques, Ruben | Villanueva, Vicente | Auvin, Stéphane

Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

2021 . Witt, Stefanie | Kristensen, Kaja | Wiegand-Grefe, Silke | Boettcher, Johannes | Bloemeke, Janika | Wingartz, Christina | Bullinger, Monika | Quitmann, Julia

A comparison of immediate release and delayed release cysteamine in 17 patients with nephropathic cystinosis

2021 . van Stein , Christina Esther | Klank, Sabrina | Grüneberg, Marianne | Ottolenghi, Chris | Grebe, Jürgen | Reunert, Janine | Harms, Erik | Marquardt, Thorsten

Smoking and alcohol, health-related quality of life and psychiatric comorbidities in Leber’s Hereditary Optic Neuropathy mutation carriers: a prospective cohort study

2021 . , Andrea | Catarino, Claudia B. | Rampeltshammer, Verena | Schindler, David | Gallenmüller, Constanze | Priglinger, Claudia | Pogarell, Oliver | Rüther, Tobias | Klopstock, Thomas

Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic

2021 . Fuerboeter, Mareike | Boettcher, Johannes | Barkmann, Claus | Zapf, Holger | Nazarian, Rojin | Wiegand-Grefe, Silke | Reinshagen, Konrad | Boettcher, Michael

Perceived mental health in parents of children with rare congenital surgical diseases: a double ABCX model considering gender

2021 . Boettcher, Johannes | Zapf, Holger | Fuerboeter, Mareike | Nazarian, Rojin | Reinshagen, Konrad | Wiegand-Grefe, Silke | Boettcher, Michael

Patient-reported outcomes on familial amyloid polyneuropathy (FAP)

2020 . Bolte, Fabian Johannes | Langenstroer, Christel | Friebel, Frauke | Hüsing-Kabar, Anna | Dugas, Martin | Schmidt, Hartmut H.