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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
Appropriate consent and health rights of children: Understanding the ethics of genomic newborn screening
26 September 2024
A new article has been published in the European Journal of Human Genetics exploring the ethical and legal landscape of introducing ...
Understanding the role of patient organisations in promoting and developing newborn screening
26 September 2024
A new article has been published in Rare Disease and Orphan Drugs Journal, describing the work of six different patient organisation...
The WHO/World Health Assembly adopts resolution concerning maternal, newborn and child mortality
21 June 2024
The WHO/World Health Assembly adopts resolution A77/A/CONF./5 “Accelerate progress towards reducing maternal, newborn and chil...
Dominican Republic moves to implement neonatal screening
30 April 2024
Please see this link: https://dominicantoday.com/dr/health/2024/04/09/dominican-republic-moves-to-implement-neonatal-screening/
Methods for estimating rare disease prevalence
18 March 2024
A new article has been published in Rare Disease and Orphan Drugs Journal, providing an overview of the different methods for estima...
New European Commission fact sheet on rare diseases
18 March 2024
The European Commission has published a new fact sheet titled “EU Action on Rare Diseases: Improving patient access to knowledge, ...
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