Red biotech
Meeting/debate
More info: sai_michela.calmasini@aulss3.veneto.it
Rare diseases, defined in Europe as those affecting fewer than 5 on 10,000, are comprised of a large group of pathologies that interests about 38,000 patients in the Veneto region only. These diseases present issues with complex diagnosis and lack of effective therapies so patients must be taken care of in highly specialised centers of expertise, but at the same time they must be supported by the local healthcare services at their place of residence with a continuous improvement of competencies and skills.
In 2017 the goal of the event was promoting awareness and basic knowledge on rare diseases. In 2018 the focus will be on innovation, both from a regulatory and research perspective impacting organisational aspects like the changes introduced with the National Levels of Care (LEA 21/01/2017) and with the Newborn Metabolic Screening Program and Ethical issues (L.157/2016). We will also cover the important topic of innovative social regulations aimed at promoting the full social inclusion and autonomy of “rare diseases” persons. Another topic will be the reorganisation of the local ethical committees. Patients are also involved to provide their needs perspective in view to support decision-making process
Program
- 13.30 Participants registration
- 14.00 Welcome and introduction
I Session: NATIONAL LEVELS OF CARE FOR RARE DISEASE
- 14.15 Lectio Magistralis – Paola Facchin
- 15.15 Discussion
II Session: EXTENDED NEWBORN METABOLIC SCREENING
- 15.30 Inherited metabolic diseases – Alberto Burlina
- 16.10 Local organization: AULSS3 Serenissima – Giovanni Battista Pozzan, Luca Vecchiato, Maurizio Pitter, Mario Lattere
- 16.30 Discussion
III Session: INNOVATIVE SOCIAL REGULATION ENACTED BY LAW
- 16.45 Law 112/2016 principles – Ernesto Marciano
- 17.30 Social and work inclusion – Marino Bottà
- 18.00 Local Ethical Committee – Giovanna Zanini; Michela Zanutti
- 18.30 Wrap up – Renza Barbon Galluppi, Michela Calmasini
PRESIDENT – Michela Calmasini Azienda Ulss 3 Serenissima
SPEAKERS AND CHAIRMAN
- Renza Barbon Galluppi, Past president UNIAMO
- Marino Bottà, Esperto in Collocamento Lavorativo
- Alberto Burlina, Azienda Ospedaliera Universitaria – Padova
- Ernesto Marciano, Presidente del Consiglio Notarile di Venezia
- Paola Facchin, Coordinamento per le Malattie Rare – Regione del Veneto
- Mario Lattere, Azienda Ulss 3 Serenissima – Chioggia
- Maurizio Pitter, Azienda Ulss 3 Serenissima – Venezia
- Giovanni Battista Pozzan, Ospedale dell’Angelo – Venezia Mestre
- Luca Vecchiato, Azienda Ulss 3 Serenissima – Mirano / Dolo
- Giovanna Zanini, Azienda Ulss 3 Serenissima – Venezia Mestre
- Michela Zanutti, Azienda Ulss 3 Serenissima – Venezia Mestre
Organizzatore: Centro Territoriale Malattie Rare Azienda Ulss 3 Serenissima Reg. Veneto