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Living with a rare disease - experiences and needs in pediatric patients and their parents

Witt S, Schuett K, Wiegand-Grefe S, Boettcher J, Quitmann J.

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Living with a rare disease - experiences and needs in pediatric patients and their parents

Orphanet J Rare Dis. 2023 Aug 11;18(1):242. doi: 10.1186/s13023-023-02837-9.

https://doi.org/10.1186/s13023-023-02837-9

37568186

ドイツ

希少疾患の種類は多岐にわたる。

Congenital malformations, deformations, and chromosomal abnormalities (Q00-Q99)

Malignant neoplasms (C00-C97)

Metabolic diseases (E70-E90) 

Neoplasms of uncertain or unknown behavior (D37-D48)

Other diseases of blood and blood-forming organs (D70-77)

Disorders of other endocrine glands (E30-E35)

Episodic and paroxysmal disorders (G40-G47)

Haemorrhagic and hematological disorders of fetus and newborn (P50-P61)

Diseases of Liver (K70-K77)

Extrapyramidal and movement disorders (G20-G26)

Disorders of psychological development (F80-89)

タグ

希少疾患

52598425_2213806042012952_84802132572173

​Meeting to spread sibling support

The Society for Disseminating Sibling Support has been active since 2004 with the aim of disseminating support for siblings of people with chronic illnesses and disabilities. Since the challenges that siblings can have change with age and last a lifetime, the support targets include not only children but also adults.

© ©​ Meeting to spread sibling support

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