Self-reported functioning among patients with ultra-rare nemaline myopathy or a related disorder in...
Self-reported functioning among patients with ultra-rare nemaline myopathy or a related disorder in Finland: a pilot study
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London: BioMed Central Ltd
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English
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London: BioMed Central Ltd
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Nemaline myopathy (NM) and related disorders (NMr) form a heterogenous group of ultra-rare (1:50,000 live births or less) congenital muscle disorders. To elucidate the self-reported physical, psychological, and social functioning in the daily lives of adult persons with congenital muscle disorders, we designed a survey using items primarily from th...
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Self-reported functioning among patients with ultra-rare nemaline myopathy or a related disorder in Finland: a pilot study
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TN_cdi_doaj_primary_oai_doaj_org_article_0f7eaff581a349dd88fde8708bb1f67c
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https://devfeature-collection.sl.nsw.gov.au/record/TN_cdi_doaj_primary_oai_doaj_org_article_0f7eaff581a349dd88fde8708bb1f67c
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ISSN
1750-1172
E-ISSN
1750-1172
DOI
10.1186/s13023-023-02973-2