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Designing rare disease care pathways in the Republic of Ireland: a co-operative model.
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.
Together4RD position statement on collaboration between European reference networks and industry.
Hedley V, Bolz-Johnson M, Hernando I, Kenward R, Nabbout R, Romero C, Schaefer F, Upadhyaya S; Together4RD Steering Group.
Hedley V, et al. Among authors: bolz johnson m.
Orphanet J Rare Dis. 2023 Sep 5;18(1):272. doi: 10.1186/s13023-023-02853-9.
Orphanet J Rare Dis. 2023.
PMID: 37670358
Free PMC article.
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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.
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"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.
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Patient journey experiences may contribute to improve healthcare for patients with rare endocrine diseases.
Webb SM, Kristensen J, Nordenström A, Vitali D, Amodru V, Wiehe LK, Bolz-Johnson M.
Webb SM, et al. Among authors: bolz johnson m.
Endocr Connect. 2022 Nov 14;11(12):e220385. doi: 10.1530/EC-22-0385. Print 2022 Dec 1.
Endocr Connect. 2022.
PMID: 36228311
Free PMC article.
Review.
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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
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