Living with a rare disease - experiences and needs in pediatric patients and their parents
- Location
-
Deutsche Nationalbibliothek Frankfurt am Main
- Extent
-
Online-Ressource, 1 online resource.
- Language
-
Englisch
- Bibliographic citation
-
Living with a rare disease - experiences and needs in pediatric patients and their parents ; volume:18 ; number:1 ; day:11 ; month:8 ; year:2023 ; pages:1-16 ; date:12.2023
Orphanet journal of rare diseases ; 18, Heft 1 (11.8.2023), 1-16, 12.2023
- Creator
- Contributor
-
SpringerLink (Online service)
- DOI
-
10.1186/s13023-023-02837-9
- URN
-
urn:nbn:de:101:1-2023110309143454683127
- Rights
-
Open Access; Der Zugriff auf das Objekt ist unbeschränkt möglich.
- Last update
-
14.08.2025, 10:50 AM CEST
Data provider
This object is provided by:
Deutsche Nationalbibliothek. If you have any questions about the object, please contact the data provider.
Deutsche Nationalbibliothek. If you have any questions about the object, please contact the data provider.
Associated
- Witt, Stefanie
- Schuett, Katharina
- Wiegand-Grefe, Silke
- Boettcher, Johannes
- Quitmann, Julia
- SpringerLink (Online service)
Other Objects (12)
Movement behaviour education for parents in prenatal, postnatal, and pediatric care in Canada: A needs assessment
Quality of life in rare diseases : needs and concerns of short statured children and their parents
Living with a Rare Disease: Psychosocial Impacts for Parents and Family Members – a Systematic Review
Pediatric Intraparotid Neurofibroma: Rare Entity
Needs assessment for enhancing pediatric clerkship readiness
The supportive care needs of parents with a child with a rare disease: results of an online survey
Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support
Pediatric urgent care education: a survey-based needs assessment
Common needs in uncommon conditions: a qualitative study to explore the need for care in pediatric patients with rare diseases
A rare pediatric malignant neck mass: Synovial sarcoma
Living with Juvenile Idiopathic Arthritis: Parent and Physician Perspectives
Information needs of children with leukemia and their parents’ perspectives of their information needs: a qualitative study
Movement behaviour education for parents in prenatal, postnatal, and pediatric care in Canada: A needs assessment
Quality of life in rare diseases : needs and concerns of short statured children and their parents
Living with a Rare Disease: Psychosocial Impacts for Parents and Family Members – a Systematic Review
Pediatric Intraparotid Neurofibroma: Rare Entity
Needs assessment for enhancing pediatric clerkship readiness
The supportive care needs of parents with a child with a rare disease: results of an online survey
Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support
Pediatric urgent care education: a survey-based needs assessment
Common needs in uncommon conditions: a qualitative study to explore the need for care in pediatric patients with rare diseases
A rare pediatric malignant neck mass: Synovial sarcoma
Living with Juvenile Idiopathic Arthritis: Parent and Physician Perspectives
Information needs of children with leukemia and their parents’ perspectives of their information needs: a qualitative study
Movement behaviour education for parents in prenatal, postnatal, and pediatric care in Canada: A needs assessment
Quality of life in rare diseases : needs and concerns of short statured children and their parents
Living with a Rare Disease: Psychosocial Impacts for Parents and Family Members – a Systematic Review
Pediatric Intraparotid Neurofibroma: Rare Entity
Needs assessment for enhancing pediatric clerkship readiness
The supportive care needs of parents with a child with a rare disease: results of an online survey
Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support
Pediatric urgent care education: a survey-based needs assessment
Common needs in uncommon conditions: a qualitative study to explore the need for care in pediatric patients with rare diseases
A rare pediatric malignant neck mass: Synovial sarcoma
Living with Juvenile Idiopathic Arthritis: Parent and Physician Perspectives