2 events of public debate/playdecide organised by Uniamo F.I.M.R. in close partnership with Assobiotec and the Rare Disease Coordination of the Umbria Region and the Abruzzo Region.
The debates will take place on September 25 in Perugia and September 26 in Pescara: comparison and discussion, facilitated by the kit-playdecide“neonatal screening” recently updated, will be shared at the in-depth seminars. An opportunity for meaningful discussion, not only for the community of the rare sick.
- In Perugia, where the Region decided to offer the SNE test to all unborn children (even before Law 167/2016), institutions, health professionals, researchers, patients and citizens will discuss the process of “transactionality”at stake here, thus how biological data collected in a clinical – preventive context can generate research that responds primarily to a medical need while generating a renewed horizon of care and public health, for all citizens.
- In Pescara, in light of the recent decision to establish a new SNE screening centre, the extended rare disease community will discuss requirements and implementation procedures of the diagnosed newborn care protocol, thanks to SNE, to extend the discussion to the patient’s path of high complexity in a framework of good practice and translational research intended as organizational research determining the quality of the process.
Venue: Ospedale Civile, Via Fonte Romana, 8 (Pescara) – Villa Umbra (Perugia)
Focus: Red Biotech
Type: Play Decide
More info: presidente@uniamo.org – comunicazione@uniamo.org
Organiser: UNIAMO FEDERAZIONE ITALIANA MALATTIE RARE