Marzena Nelken is a board member of the Polish PKU and RD Association Ars Vivendi. She has been working with children, their families and older people with phenylketonuria and other inherited metabolic diseases for over 18 years now, starting as a volunteer. She is experienced in organising events like trainings, workshops, conferences and holidays for children and families. In the Federation of Polish Patients – the umbrella organisation with almost 100 patient organisations –, she supervises projects working on both national and international level.
Currently Marzena is coordinating public dialog between Polish Ministry of Health, Government and patients’ community in Poland. The project is being carried out all over the country, in all regions.
Marzena is also involved in the EUPATI project in Poland and has coordinated all the meetings of the Polish EUPATI National Platform. Moreover, she is a student of the EUPATI academy in 3rd Cohort on clinical trials.
Marzena has translated many booklets and information, mostly on rare diseases, so patients in Poland have the most updated knowledge about their disease. She worked with doctors, lawyers, psychologists and dieticians to publish handbooks for patients.
She is a great advocate for patients as she has always had direct contact to them and knows patients’ problems at first-hand.