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    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...

    When is the best time to screen for treatable genetic disorders?

    14 April 2023|by isnsneo|Uncategorized
    A new article published in the American Journal of Human Genetics aims to establish a framework for optimising the timing of screening for treatable genetic disorders. The authors identify four points at which critical decisions might be made: prenatal, the newborn period, childhood, and adulthood. ...

    Steps since the 2021 UN Resolution on Rare Diseases: A review

    26 January 2023|by isnsneo|Uncategorized
    Last month marks a year since the adoption in December 2021 of the UN Resolution ‘Addressing the challenges of persons living with a rare diseases and their familiies‘, the first engagement of its kind by the 193 member countries in setting a course to improve the lives of those living w...

    40 Years of the USA’s Orphan Drug Act: NORD takes stock

    26 January 2023|by isnsneo|Uncategorized
    This month, the National Organization for Rare Disorders (NORD) is joining the larger United States’ rare disease community in celebrating the 40th anniversary of the Orphan Drug Act (ODA). Signed into law in 1983, the ODA marked one of the first major victories for rare disease advocates. It ...

    Universal neonatal screening for Sickle Cell Disease in France

    23 November 2022|by isnsneo|Uncategorized
    The Haute Autorité de la Santé in France recently recommended to switch from targeted to universal Sickle Cell Disease screening in France. Please see https://www.has-sante.fr/jcms/p_3385427/fr/avis-n2022-0060/ac/sespev-du-10-novembre-2022-du-college-de-la-haute-autorite-de-sante-relatif-a-la-gene...

    Together4RD launches policy asks at European Parliament

    18 November 2022|by isnsneo|Uncategorized
    On 10 November 2022, Together4RD organised an event at the European Parliament to launch their main policy asks to foster collaboration between European Reference Networks (ERNs) and private partners. The event brought together members of the initiative, including ERNs, with stakeholders from the ra...

    An optimal approach to rare disease management based on national experiences in Europe, North America and East Asia

    10 August 2022|by isnsneo|Uncategorized
    A new study has been published in the Rare Diseases and Orphan Drugs Journal presenting transdisciplinary approaches to managing rare diseases in Europe, North America and East Asia coordinated by the national governments. The study compares the national rare disease plans in Germany, Spain, the UK,...

    Michigan to destroy leftover blood samples it took from newborns

    12 July 2022|by isnsneo|Uncategorized
    The state of Michigan has agreed to destroy more than 3 million dried blood spots taken from babies and kept in storage, a partial settlement in an ongoing lawsuit over consent and privacy in the digital age. At the state’s direction, hospitals have routinely pricked the heels of newborns to d...

    France: Official number of cases per rare disease

    12 July 2022|by isnsneo|Uncategorized
    The French National Database on Rare Diseases (BNDMR) has published for the first time the number of rare disease patients registered in the database by disease, covering more than 4 600 rare diseases. This information provides visibility to patients and will help promote research and development of...
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