Nov 14, 2012

EURORDIS-NORD-CORD release a Joint Declaration of 10 Key Principles for Rare Disease Patient Registries

The European Organisation for Rare Diseases (EURORDIS), the National Organization for Rare Disorders (NORD) and the Canadian Organization for Rare Disorders (CORD) have released a joint declaration on common principles regarding Rare Disease Patient Registries.
In the 10 key principles of the declaration, EURORDIS, NORD and CORD recognise that Rare Disease Patient Registries are key instruments for increasing knowledge on rare diseases, supporting fundamental clinical and epidemiological research.
It is estimated that 60 million people live with a rare disease in Europe and North America alone
For more information
Joint declaration

World PI Week
IPOPI would be grateful for any support to the important work for primary immunodeficiencies.

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