Thanks to the Law 167/2016 ” Disposizioni in materia di accertamenti diagnostici neonatali obbligatori per la prevenzione e la cura delle malattie metaboliche ereditarie “, Italy is at the forefront of transforming a non-invasive test, such as the extended neonatal screening, which allows identification of 40 inherited metabolic diseases, in a right of health for all and in a new model of preventive medicine and research starting from the data collected by the screening program itself. With Eurordis, UNIAMO F.I.M.R. contributed to develop the first PlayDecide kit for neonatal screening, then used as a tool for highly participatory debates, during the last editions of the European Biotech Week.

The times are ripe:

  • to update the dedicated kit, as it is obsolete
  • to articulate the update itself as an exemplary process of involvement, of public informatio

Uniamo F.I.M.R. thus proposes a double action of :

  • systemic empowerment
  • public information and awareness.

The tried-and-tested innovative approach of an inclusive scientific community, the same path of updating, will be fundamental to transform the activities of the EBW 2018 into an exemplary experience of systemic empowerment.

In fact, two public debate events will be scheduled, with the new PlayDecide kit on extended neonatal screening as a springboard:

the kit itself will be validated,

and we will ask ourselves how the collaboration between patient and citizen associations, scientific societies, screening centers, industry and research institutions, can and must create that virtuous circle predisposing the conditions of possibility for a quality life, with diagnosis and therapies validated and accessible.

 

For more information please reach out to:

manuela.vaccarotto@uniamo.org

sara.casati@gmail.com