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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
An optimal approach to rare disease management based on national experiences in Europe, North America and East Asia
10 August 2022
A new study has been published in the Rare Diseases and Orphan Drugs Journal presenting transdisciplinary approaches to managing rar...
Michigan to destroy leftover blood samples it took from newborns
12 July 2022
The state of Michigan has agreed to destroy more than 3 million dried blood spots taken from babies and kept in storage, a partial s...
France: Official number of cases per rare disease
12 July 2022
The French National Database on Rare Diseases (BNDMR) has published for the first time the number of rare disease patients registere...
International Neonatal Screening Day website now available
6 June 2022
ISNS, together with IPOPI and ESID founding organisation of Screen4Rare, is pleased to announce Screen4Rare’s launch of the In...
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...
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