Clinical focus

Rare Diseases

Everything on the hub tagged Rare Diseases: researchers, groups, current studies, resources and published literature together.

12 results

Published literature

Cardiopulmonary resuscitation in pediatric patients under palliative home care - A multicenter retrospective study
Schneck E, Janßen G, Vaillant V, Voelker T, Dechert O, Trocan L, Schmitz L, Rohde M, Sander M, Hauch H · Frontiers in Pediatrics · 2022
Documentation of Psychosocial Distress and Its Antecedents in Children with Rare or Life-Limiting Chronic Conditions
McCarthy S, Golembiewski E, Gravholt D, Clark J, Clark J, Fischer C, Mulholland H, Babcock K, Montori V, Jones A · Children (Basel) · 2022
Ethical challenges for a new generation of early-phase pediatric gene therapy trials
Iyer A, Saade D, Bharucha-Goebel D, Foley A, Averion G, Paredes E, Gray S, Bonnemann C, Grady C, Hendriks S, Rid A · Genetics in Medicine · 2021
Exploring What Motivates Parents of Children Living With Medical Complexity to Participate in Research
Kim L, Hermansen A, Cook K, Siden H · Child: Care, Health and Development · 2024
Inborn Errors Of Metabolism In Neonatal Period: A Challenging Management In Tunisia
Chioukh F, Chaabane A, Khemis T, Jlassi A, Kaabachi N, Monastiri K · Tunisie Medicale · 2019
Living through liminality? Situating the transitional experience of parents of children with mucopolysaccharidoses
Somanadhan S, Brinkley A, Larkin P · Scandinavian journal of caring sciences. · 2021
Palliative epilepsy surgery in Dravet syndrome-case series and review of the literature
Dlouhy B, Miller B, Jeong A, Bertrand M, Limbrick J, Smyth M · Childs Nervous System · 2016
The impact of a sibling's life-limiting genetic condition on adult brothers and sisters
Brown E, Coad J, Franklin A · American Journal of Medical Genetics, Part A · 1754
The lived experience of parents of children with mucopolysaccharidosis (MPS)
Somanadhan S, Larkin P · Molecular Genetics and Metabolism · 2017

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