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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
Steps since the 2021 UN Resolution on Rare Diseases: A review
26 January 2023
Last month marks a year since the adoption in December 2021 of the UN Resolution ‘Addressing the challenges of persons living ...
40 Years of the USA’s Orphan Drug Act: NORD takes stock
26 January 2023
This month, the National Organization for Rare Disorders (NORD) is joining the larger United States’ rare disease community in...
Universal neonatal screening for Sickle Cell Disease in France
23 November 2022
The Haute Autorité de la Santé in France recently recommended to switch from targeted to universal Sickle Cell Disease screening i...
Together4RD launches policy asks at European Parliament
18 November 2022
On 10 November 2022, Together4RD organised an event at the European Parliament to launch their main policy asks to foster collaborat...
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...
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