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Defining the complex needs of families with rare diseases—the example of telomere biology disorders

Crossref DOI link: https://doi.org/10.1038/s41431-024-01697-6

Published Online: 2024-10-01

Published Print: 2024-12

Update policy: https://doi.org/10.1007/springer_crossmark_policy

Authors

Wilsnack, Catherine

Rising, Camella J.

Pearce, Emily E. http://orcid.org/0000-0003-4222-9340
Forbes Shepherd, Rowan http://orcid.org/0000-0003-4510-0542
Thompson, Ashley S. http://orcid.org/0000-0003-1663-0317
Majid, Alina

Werner-Lin, Allison

Savage, Sharon A. http://orcid.org/0000-0001-6006-0740
Hutson, Sadie P.
Funding

Funding for this research was provided by:

U.S. Department of Health & Human Services | NIH | NCI | Division of Cancer Epidemiology and Genetics, National Cancer Institute

U.S. Department of Health & Human Services | NIH | NCI | Division of Cancer Epidemiology and Genetics, National Cancer Institute

U.S. Department of Health & Human Services | NIH | NCI | Division of Cancer Epidemiology and Genetics, National Cancer Institute

U.S. Department of Health & Human Services | NIH | NCI | Division of Cancer Epidemiology and Genetics, National Cancer Institute

U.S. Department of Health & Human Services | NIH | NCI | Division of Cancer Epidemiology and Genetics, National Cancer Institute

U.S. Department of Health & Human Services | NIH | NCI | Division of Cancer Epidemiology and Genetics, National Cancer Institute

U.S. Department of Health & Human Services | NIH | NCI | Division of Cancer Epidemiology and Genetics, National Cancer Institute

U.S. Department of Health & Human Services | NIH | NCI | Division of Cancer Epidemiology and Genetics, National Cancer Institute

U.S. Department of Health & Human Services | NIH | NCI | Division of Cancer Epidemiology and Genetics, National Cancer Institute
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Text and Data Mining valid from 2024-10-01

Version of Record valid from 2024-10-01
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Article History

Received: 29 February 2024

Revised: 21 May 2024

Accepted: 18 September 2024

First Online: 1 October 2024

Competing interests

: The authors declare no competing interests.

: This study was approved by the National Institutes of Health (NIH) IRB (NIH Protocol 000502-C, ClinicalTrials.gov, Identifier NCT04959188). All participants provided consent before beginning the online survey and before beginning the audio-recorded telephone interview.

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