Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Comment
. 2021 Jun;29(6):1034-1035.
doi: 10.1038/s41431-020-00764-y. Epub 2020 Dec 1.

Reply to E. Vicente et al

Affiliations
Comment

Reply to E. Vicente et al

Ana Rath et al. Eur J Hum Genet. 2021 Jun.
No abstract available

PubMed Disclaimer

Conflict of interest statement

The authors declare that they have no conflict of interest.

Comment on

References

    1. Orphanet. Procedural document on epidemiology of rare diseases in Orphanet, February 2019, Number 01. 2019. https://www.orpha.net/orphacom/cahiers/docs/GB/Epidemiology_in_Orphanet_.... Accessed October 2020.
    1. Gatta G, van der Zwan JM, Casali PG, Siesling S, Dei Tos AP, et al. RARECARE working group. Rare cancers are not so rare: the rare cancer burden in Europe. Eur J Cancer. 2011;47:2493–511. doi: 10.1016/j.ejca.2011.08.008. - DOI - PubMed
    1. Nguengang Wakap S, Lambert DM, Olry A, Rodwell C, Gueydan C, Lanneau V, et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet. 2020;28:165–73. doi: 10.1038/s41431-019-0508-0. - DOI - PMC - PubMed
    1. Genetic Alliance UK, 2016. The hidden costs of rare disease: a feasilbility study. https://geneticalliance.org.uk/wp-content/uploads/2016/06/hidden-costs-f.... Accessed October 2020.
    1. Juggling care and daily life. The balancing act of the rare disease community. A Rare Barometer survey. http://download2.eurordis.org.s3.amazonaws.com/rbv/2017_05_09_Social%20s.... Accessed October 2020.