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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
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News
Tyrosinemia type 1 : prognosis of type 1 tyrosinemia has improved due to newborn screening
24 January 2021
Consult the pubmed abstract To read more about “Tyrosinemia type 1” Orphanet J Rare Dis . 2020 Oct 12;15(1):281. (source: OrphaN...
ERN: Launch of an exchange Programme for healthcare professionals in European Reference Networks
24 January 2021
An ERN Exchange Programme 2020-2022 for healthcare professionals in European Reference Networks has been launched, funded by the Eur...
ERNs and Brexit
24 January 2021
The Brexit transition period for the United Kingdom, which expired on 31 December 2020, marked the end of UK centre participation in...
Rare Digital Disease Day 2021 : Online but together !
24 January 2021
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amo...
Supporting the Development of Newborn Screening in Europe
21 January 2021
There is a considerable and long-standing variation in the practice of newborn screening among the countries of Europe. The reason...
ERN RITA and Screen4Rare: Call to action for a newborn screening for rare diseases
7 January 2021
Screen4Rare is an initiative launched by the International Patient Organisation for Primary Immunodeficiencies (IPOPI), the Internat...
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