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
Review
. 2021 Aug 31:11:03064.
doi: 10.7189/jogh.11.03064. eCollection 2021.

Drafting a blueprint for the design of a rare disease ecosystem in Slovenia: Identifying salient opportunities and outlining policy recommendations

Dalibor Stanimirovic  1 , Eva Murko  1 , Tadej Battelino  2   3 , Urh Groselj  2 , Mojca Zerjav Tansek  2
Affiliations
Review

Drafting a blueprint for the design of a rare disease ecosystem in Slovenia: Identifying salient opportunities and outlining policy recommendations

Dalibor Stanimirovic et al. J Glob Health. .
No abstract available

PubMed Disclaimer

Conflict of interest statement

Competing interests: The authors have completed the ICMJE Disclosure of Interest Form (available upon request from the corresponding author), and declare no competing interests.

Figures

None
Photo: Logo of the National Contact Point for rare diseases in Slovenia (https://www.redkebolezni.si/, used with permission.
Figure 1
Figure 1
The blueprint for the design of an RD ecosystem in Slovenia.
See this image and copyright information in PMC

References

    1. Ministry of Health. Work plan in the field of rare diseases in the Republic of Slovenia. Ministry of Health of the Republic of Slovenia, Ljubljana, 2011.
    1. Nguengang Wakap SN, 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. 10.1038/s41431-019-0508-0 - DOI - PMC - PubMed
    1. Ferreira CR.The burden of rare diseases. Am J Med Genet A. 2019;179:885-92. 10.1002/ajmg.a.61124 - DOI - PubMed
    1. Sklyar A, Kowalkowski C, Tronvoll B, Sörhammar D.Organizing for digital servitization: a service ecosystem perspective. J Bus Res. 2019;104:450-60. 10.1016/j.jbusres.2019.02.012 - DOI
    1. Tambuyzer E, Vandendriessche B, Austin CP, Brooks PJ, Larsson K, Needleman KIM, et al. Therapies for rare diseases: therapeutic modalities, progress and challenges ahead. Nat Rev Drug Discov. 2020;19:93-111. 10.1038/s41573-019-0049-9 - DOI - PubMed