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Designing rare disease care pathways in the Republic of Ireland: a co-operative model.
Ward AJ, Murphy D, Marron R, McGrath V, Bolz-Johnson M, Cullen W, Daly A, Hardiman O, Lawlor A, Lynch SA, MacLachlan M, McBrien J, Ni Bhriain S, O'Byrne JJ, O'Connell SM, Turner J, Treacy EP. Ward AJ, et al. Among authors: bolz johnson m. Orphanet J Rare Dis. 2022 Apr 11;17(1):162. doi: 10.1186/s13023-022-02309-6. Orphanet J Rare Dis. 2022. PMID: 35410222 Free PMC article.
Our greatest untapped resource: our patients.
Bolz-Johnson M, Kenny T, Le Cam Y, Hernando I. Bolz-Johnson M, et al. J Community Genet. 2021 Apr;12(2):241-246. doi: 10.1007/s12687-021-00524-5. Epub 2021 Apr 21. J Community Genet. 2021. PMID: 33884523 Free PMC article.
"Patient Journeys": improving care by patient involvement.
Bolz-Johnson M, Meek J, Hoogerbrugge N. Bolz-Johnson M, et al. Eur J Hum Genet. 2020 Feb;28(2):141-143. doi: 10.1038/s41431-019-0555-6. Epub 2019 Dec 4. Eur J Hum Genet. 2020. PMID: 31801983 Free PMC article. No abstract available.
Rare Disease Day: Amplifying voices, advocating hope.
Cederroth H, Gahl WA, Landouré G, Zhang S, Bolz-Johnson M. Cederroth H, et al. Among authors: bolz johnson m. Med. 2024 Feb 9;5(2):103-105. doi: 10.1016/j.medj.2024.01.003. Med. 2024. PMID: 38340703