COSYN partner, EGAN has set an European PAB, consisting of people with both experience-based and medical/scientific knowledge. They will participate in the development of deliverables and advice on scientific, ethical, communicational and implemental issues from a European patient perspective. Vereniging Samenwerkende Ouder en Patient (VSOP) will act on behalf of EGAN, and work together in this project with other European patient organizations and individual expert parents whenever needed.
It is important to have the patient view on genetics-based personalised medicine in the field of psychiatric disorders and the early therapeutic interventions connected to it. It is also important to have their views on the relationship between genetic predisposition and issues like social stigmatization and other societal consequences, influence on reproductive decision making, etc.
It will be important for the aims and context of COSYN to have the patients’ perspective on the role of the pharmaceutical therapy COSYN aims to develop, relates to the overall treatment of their psychiatric disorders and their quality of life. During the Midterm meeting we will organise an open conference for patient organisations and their caregivers to present results so far, discuss further steps and timeline and ethical issues related. A special budget is dedicated to pay for travel costs of patient who can’t afford the trip.
The PAB is part of the Management team and involved in the share of data, samples and knowledge and provides requested and unrequested advice.