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Home
News
Events
ISNS Info
ISNS Facts
ISNS Regions
Guthrie award
Dussault medal
Loeber award
Constitution
Guidelines
How to become a member
Links
Membership-info
Contact
Member login
News
Methods for estimating rare disease prevalence
18 March 2024
A new article has been published in Rare Disease and Orphan Drugs Journal, providing an overview of the different methods for estima...
New European Commission fact sheet on rare diseases
18 March 2024
The European Commission has published a new fact sheet titled “EU Action on Rare Diseases: Improving patient access to knowledge, ...
Screening and Prenatal Diagnosis
15 February 2024
The importance of evidence-based screening programmes Recently, an article was published in The Lancet discussing the importance of ...
Conclusions of the Conference on Rare Diseases and European Reference Networks
15 February 2024
The conclusions and recommendations of the conference on Rare Diseases and European Reference Networks “How to ensure European sol...
Using economic evaluations to make decisions about the content of newborn screening programs in LMIC
25 June 2023
A new article in the Journal of Inborn Errors of Metabolism and Screening uses the national newborn screening (NBS) program in Vietn...
CLSI NBS02: Newborn Screening Follow-Up ; new edition available
22 May 2023
CLSI NBS02 describes the basic principles, scope, and range of follow-up and education activities within the newborn screening progr...
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