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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
USA: NORD publishes annual State Report Card
1 March 2026
The United States’ National Organization for Rare Disorders (NORD) has released its annual State Report Card, assessing all 50 US ...
Understanding attitudes towards genetic newborn screening: A systematic review
1 March 2026
A systematic review has been published in the Orphanet Journal of Rare Diseases, synthesising the current literature on preferences,...
EU Parliament Research Services demonstrates added value of a future European Action Plan for Rare Diseases
1 March 2026
The European Parliamentary Research Service (EPRS) has published the results of a European Added Value Assessment of a future EU rar...
EURORDIS: Creating a European Blueprint for Rare Diseases
18 February 2026
EURORDIS is leading a multi-stakeholder initiative to develop a European Blueprint for Rare Diseases – a detailed design for h...
Get ready for Rare Disease Day 2026!
18 February 2026
As we head into February, the rare disease community is gearing up to celebrate Rare Disease Day 2026 on 28 February. Coordinated by...
World Health Assembly adopts first-ever Resolution on rare diseases
8 July 2025
On 24 May 2025, Member States of the World Health Assembly (WHA) voted to adopt the organisation’s first-ever Resolution on Rare D...
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