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The organizational dimension in rare and complex diseases care management: an application of RarERN Path© methodology in ataxias, dystonia and phenylketonuria.

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Title: The organizational dimension in rare and complex diseases care management: an application of RarERN Path© methodology in ataxias, dystonia and phenylketonuria.
Authors: Cannizzo, Sara1 (AUTHOR), Quoidbach, Vinciane2,3 (AUTHOR), Trieste, Leopoldo1 (AUTHOR), Benson, Monika4 (AUTHOR), Federico, Antonio5 (AUTHOR), Filla, Alessandro6 (AUTHOR), Gilroy, Bernadette Sheehan7,8 (AUTHOR), Giunti, Paola9 (AUTHOR), Graeßner, Holm10,11,12 (AUTHOR), Greenfield, Julie13 (AUTHOR), Hagedorn, Tobias14,15 (AUTHOR), Hermida, Alvaro16 (AUTHOR), Hunt, Barry13 (AUTHOR), MacDonald, Anita17 (AUTHOR), Morgante, Francesca18 (AUTHOR), Oertel, Wolfgang2,19 (AUTHOR), Pastores, Gregory20 (AUTHOR), Pauly, Martje G.21 (AUTHOR), Reinhard, Carola10,11,12 (AUTHOR), Relja, Maja22 (AUTHOR)
Source: BMC Health Services Research. 6/4/2025, Vol. 25 Issue 1, p1-10. 10p.
Database: Academic Search Ultimate
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ISSN:14726963
DOI:10.1186/s12913-025-12784-9