Genetic testing and newborn screening
Eighty percent of rare diseases have a genetic origin. Genetic issues, such as pre-implantation genetic diagnosis, newborn screening and genetic testing are already in the Commission Communication and Council Recommendation on European Action in the Field of Rare Disease.
These issues stir lively debate in the social and political agendas in many countries, and have great ethical and financial implications.
Our advocacy activities
Today, more than half of new national policies, laws and regulations stem from EU policies, directives and regulations. Since Eurordis represents rare disease patients from all...
Preimplantation Genetic Diagnosis and patient mobility
Preimplantation Genetic Diagnosis (PGD) - a technique of high interest to rare disease patients - offers an interesting case of patient mobility.
Shaping future policies and practices of NBS in Europe
A workshop for patient advocates on newborn screening for rare diseases was organised at the EURORDIS Membership Meeting.
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