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    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...

    International Neonatal Screening Day website now available

    6 June 2022|by isnsneo|Uncategorized
    ISNS, together with IPOPI and ESID founding organisation of Screen4Rare, is pleased to announce Screen4Rare’s launch of the International Neonatal Screening Day (ISND) website (also: INSD2022) We hope you will join INSD2022, this global effort to celebrate, raise awareness, inspire others and ...

    Report NGO Committee for Rare Diseases on Rare Disease Day event “Rare Diseases: A Global Priority for Equity”

    17 May 2022|by isnsneo|Uncategorized
    The NGO Committee for Rare Diseases and its partners, including Rare Diseases International, the Ågrenska Foundation and EURORDIS, have published a report of the 2022 global Rare Disease Day event entitled “Rare Diseases: A Global Priority for Equity” held under the patronage of the Que...

    Campaign for the adoption of a Rare Disease strategy in Canada

    17 May 2022|by isnsneo|Uncategorized
    The Canadian Organization for Rare Disorders (CORD) has launched a campaign for the formal adoption of a Rare Disease strategy in Canada. CORD is calling rare disease patients and Canadians in general to share their support for a rare disease strategy with MPs and provincial representatives and thro...
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