Omics research will clearly have major consequences for the general public, in particular those undergoing diagnosis and seeking treatment for a neuromuscular or neurodegenerative disease, and for patients’ associations. The close collaboration of patients’ organisations is thus required. The PAC will be composed of patient association representatives that will advise the project. The PAC will attend project meetings and will advise on patients’ needs and concerns. Their role is also to ensure appropriate and fast dissemination of the project aims and progress to the patient community and to work closely (sometimes jointly) with the Project Ethics Council.
Marita Pohlschmidt |
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Peter Reusner |
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Inge Schwersenz |
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