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Development of models of care coordination for rare conditions: a qualitative study.
Walton H, Simpson A, Ramsay AIG, Hunter A, Jones J, Ng PL, Leeson-Beevers K, Bloom L, Kai J, Kokocinska M, Sutcliffe AG, Morris S, Fulop NJ. Walton H, et al. Among authors: bloom l. Orphanet J Rare Dis. 2022 Feb 14;17(1):49. doi: 10.1186/s13023-022-02190-3. Orphanet J Rare Dis. 2022. PMID: 35164822 Free PMC article.
Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals.
Walton H, Ng PL, Simpson A, Bloom L, Chitty LS, Fulop NJ, Hunter A, Jones J, Kai J, Kerecuk L, Kokocinska M, Leeson-Beevers K, Parkes S, Ramsay AIG, Sutcliffe A, Taylor C, Morris S. Walton H, et al. Among authors: bloom l. Orphanet J Rare Dis. 2023 Nov 23;18(1):364. doi: 10.1186/s13023-023-02934-9. Orphanet J Rare Dis. 2023. PMID: 37996938 Free PMC article.
Preferences for coordinated care for rare diseases: discrete choice experiment.
Morris S, Walton H, Simpson A, Leeson-Beevers K, Bloom L, Hunter A, Ramsay AIG, Fulop NJ, Chitty LS, Kai J, Sutcliffe AG, Kokocinska M, Kerecuk L, Taylor CA, Ng PL. Morris S, et al. Among authors: bloom l. Orphanet J Rare Dis. 2024 Sep 9;19(1):332. doi: 10.1186/s13023-024-03353-0. Orphanet J Rare Dis. 2024. PMID: 39252123 Free PMC article.
The power of patient-led global collaboration.
Bloom L, Schubart J, Bascom R, Hakim A, Francomano CA. Bloom L, et al. Am J Med Genet C Semin Med Genet. 2021 Dec;187(4):425-428. doi: 10.1002/ajmg.c.31942. Epub 2021 Nov 6. Am J Med Genet C Semin Med Genet. 2021. PMID: 34741496 Review.
The international consortium on the Ehlers-Danlos syndromes.
Bloom L, Byers P, Francomano C, Tinkle B, Malfait F; Steering Committee of The International Consortium on the Ehlers-Danlos Syndromes. Bloom L, et al. Am J Med Genet C Semin Med Genet. 2017 Mar;175(1):5-7. doi: 10.1002/ajmg.c.31547. Am J Med Genet C Semin Med Genet. 2017. PMID: 28306227
264 results