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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
Report NGO Committee for Rare Diseases on Rare Disease Day event “Rare Diseases: A Global Priority for Equity”
17 May 2022
The NGO Committee for Rare Diseases and its partners, including Rare Diseases International, the Ågrenska Foundation and EURORDIS, ...
Campaign for the adoption of a Rare Disease strategy in Canada
17 May 2022
The Canadian Organization for Rare Disorders (CORD) has launched a campaign for the formal adoption of a Rare Disease strategy in Ca...
Launch of the European Health Data Space
17 May 2022
On 3 May 2022, the European Commission has launched the European Health Data Space (EHDS). The EHDS will notably enhance access and ...
Mothers’ knowledge and attitudes about newborn screening in Jordan
14 April 2022
A new article has been published in the Journal of Community Genetics on the knowledge and attitudes of mothers regarding newborn sc...
MetabERN: Article on the Screen4rare initiative for newborn screening programmes in Europe
14 April 2022
MetabERN has published a new article in the Lancet Regional Health journal on newborn screening programmes in Europe. The article pr...
MetabERN: Study on the evolution of rare disease registries
14 April 2022
MetabERN has published a new article in the Frontiers in Endocrinology journal analysing rare disease registries and their evolution...
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