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    Appropriate consent and health rights of children: Understanding the ethics of genomic newborn screening

    26 September 2024|by isnsneo|Uncategorized
    A new article has been published in the European Journal of Human Genetics exploring the ethical and legal landscape of introducing genomic screening into existing newborn bloodspot screening programs. The authors pay particular attention to the idea of consent, and the delicate balance with which i...

    Understanding the role of patient organisations in promoting and developing newborn screening

    26 September 2024|by isnsneo|Uncategorized
    A new article has been published in Rare Disease and Orphan Drugs Journal, describing the work of six different patient organisations around the globe to advocate for newborn screening (NBS) and better awareness of rare diseases. In this collaboration between the International Rare Diseases Research...

    The WHO/World Health Assembly adopts resolution concerning maternal, newborn and child mortality

    21 June 2024|by isnsneo|Uncategorized
    The WHO/World Health Assembly adopts resolution A77/A/CONF./5 “Accelerate progress towards reducing maternal, newborn and child mortality in order to achieve Sustainable Development Goal targets 3.1 and 3.2” June 21, 2024

    Dominican Republic moves to implement neonatal screening

    30 April 2024|by isnsneo|Uncategorized
    Please see this link: https://dominicantoday.com/dr/health/2024/04/09/dominican-republic-moves-to-implement-neonatal-screening/

    Methods for estimating rare disease prevalence

    18 March 2024|by isnsneo|Uncategorized
    A new article has been published in Rare Disease and Orphan Drugs Journal, providing an overview of the different methods for estimating the prevalence of rare diseases (RD). Most RD lack reliable epidemiological data, which poses challenges for therapeutic and management options. Furthermore, epide...

    New European Commission fact sheet on rare diseases

    18 March 2024|by isnsneo|Uncategorized
    The European Commission has published a new fact sheet titled “EU Action on Rare Diseases: Improving patient access to knowledge, diagnosis and care.” This document contains key statistics on rare diseases in the EU, as well as an overview of the different actions currently undertaken by Europea...

    Screening and Prenatal Diagnosis

    15 February 2024|by isnsneo|Uncategorized
    The importance of evidence-based screening programmes Recently, an article was published in The Lancet discussing the importance of evidence-based approaches in population screening, particularly when introducing genomic analysis. The authors draw on their experiences working in the genomics field i...

    Conclusions of the Conference on Rare Diseases and European Reference Networks

    15 February 2024|by isnsneo|Uncategorized
    The conclusions and recommendations of the conference on Rare Diseases and European Reference Networks “How to ensure European solidarity for patients?” are now available. The conference was organised by the Spanish presidency of the EU Council, and was held in October 2023 in Bilbao, Spain. It ...

    Using economic evaluations to make decisions about the content of newborn screening programs in LMIC

    25 June 2023|by isnsneo|Uncategorized
    A new article in the Journal of Inborn Errors of Metabolism and Screening uses the national newborn screening (NBS) program in Vietnam as an example of the potential benefits and challenges of using economic evaluations to make decisions about the content of such programs. Compared to high-income co...

    CLSI NBS02: Newborn Screening Follow-Up ; new edition available

    22 May 2023|by isnsneo|Uncategorized
    CLSI NBS02 describes the basic principles, scope, and range of follow-up and education activities within the newborn screening program and system. NBS02 provides additional information on: Data management and analysis for follow-up. Considerations with advanced screening technology. Follow-up and ed...
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