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Preliminary program - Società Italiana di Pediatria
FONDAZIONE 1 European Congress on Paediatric Palliative Care st MARUZZA LEFEBVRE D’OVIDIO ONLUS Rome, 28 - 30 November 2012 Acquario Comunale, Piazza Manfredo Fanti, 47 Background Preliminary program • Children, like adults, are affected by incurable illness. Regardless of age, they experience all the clinical, psychological, ethical and spiritual problems linked to incurable disease and death. SCIENTIFIC BOARD Franca Benini (Chair) Chantal Wood (Co-chair) Ricardo Martino Alba Eva Bergsträsser Delia Birtar Lizzie Chambers Finella Craig Richard Hain Ulrika Kreicbergs Julie Ling Joan Marston Marcello Orzalesi Nicola Pirozzi Boris Zernikow CONFERENCE SECRETARIAT Phone:+ 39 06 3290609 Fax: + 39 06 36292743 [email protected] in collaboration with • In recent years the developed world has seen an increase in the prevalence of incurable disease and disability. Medical and technical advances have reduced infant and child mortality rates and, at the same time, have improved the survival rates of children with severe and potentially lethal pathologies, even if a cure is not always possible. • In order to maximize the health and quality-‐of-‐life of children and families affected by life-‐limiting and life-‐threatening illness, there is a need for a profound rethinking of how healthcare services are provided for them. • In this context, palliative care is the most appropriate solution: it provides effective, holistic care and represents an essential and irreplaceable aspect of the approach to the child and family. • In Europe there are currently a number of diverse services in place, some well-‐established that represent important reference points, others, more recently set up, are currently being developed. Even if tailored to different cultural needs and social organization, these share common challenges in addressing needs and in the availability of resources. Objectives • Advance paediatric palliative sciences • Enhance professional development • Provide networking opportunities Target audience • All professionals involved in the scientific, clinical, organizational, ethical, legal, training and information sectors linked to the care of children affected by life-‐limiting and life-‐threatening illness. Promoter/Coordinator: • Maruzza Lefebvre D’Ovidio Foundation In collaboration with: • European Association for Palliative Care (EAPC ) Official Partners • Italian Ministry of Health • Bambino Gesu’ Paediatric Hospital • Associazione Culturale Pediatri (ACP) • Società Italiana di Pediatria (SIP) • Fondazione Gigi Ghirotti With the auspices of • Presidenza della Repubblica (pending) • Presidenza del Consiglio dei Ministri • Comune di Roma • Istituto Superiore di Sanità (ISS) • Società Italiana di Cure Palliative (SICP) • Federazione Cure Palliative (FedCP) • European Paediatric Association (EPA) (pending) • International Children’s Palliative Care Network (ICPCN) • Together for Short lives • UNIAMO FIMR ONLUS -‐ Federazione Italiana Malattie Rare Main Supporters • Recordati Pharmaceutical Group – Orphan Europe • Silversea FONDAZIONE MARUZZA LEFEBVRE D’OVIDIO ONLUS SCIENTIFIC BOARD Franca Benini (Chair) Chantal Wood (Co-chair) Ricardo Martino Alba Eva Bergsträsser Delia Birtar Lizzie Chambers Finella Craig Richard Hain Ulrika Kreicbergs Julie Ling Joan Marston Marcello Orzalesi Nicola Pirozzi Boris Zernikow CONFERENCE SECRETARIAT Phone:+ 39 06 3290609 Fax: + 39 06 36292743 [email protected] in collaboration with 1 European Congress on Paediatric Palliative Care st Rome, 28 - 30 November 2012 Scientific Committee: Franca Benini (Chair) Chantal Wood (Co-‐chair) Eva Bergsträsser Delia Birtar Lizzie Chambers Finella Craig Richard Hain Ulrika Kreicbergs Julie Ling Joan Marston Ricardo Martino Alba Marcello Orzalesi Nicola Pirozzi Boris Zernikow Faculty Bruno Dallapiccola Sheila Payne Adriana Turriziani Alberto G. Ugazio 2 FONDAZIONE MARUZZA LEFEBVRE D’OVIDIO ONLUS SCIENTIFIC BOARD Franca Benini (Chair) Chantal Wood (Co-chair) Ricardo Martino Alba Eva Bergsträsser Delia Birtar Lizzie Chambers Finella Craig Richard Hain Ulrika Kreicbergs Julie Ling Joan Marston Marcello Orzalesi Nicola Pirozzi Boris Zernikow CONFERENCE SECRETARIAT Phone:+ 39 06 3290609 Fax: + 39 06 36292743 [email protected] in collaboration with 1 European Congress on Paediatric Palliative Care st th Wednesday 28 November 2012 17.00-‐17.45 Rome, 28 - 30 November 2012 Institutional welcome address • Renato Balduzzi – Italian Ministry of Health (pending) • Gianni Alemanno – Mayor of Rome (pending) • Francesca Ratti – Deputy Secretary-‐General of the European Parliament Director General 17.45-‐19.30 Opening Ceremony • • • • • • Franca Benini – Congress President Chantal Wood – Vice President Giuseppe Profiti – President of Bambino Gesù Children’s Hospital Franco De Conno – Honorary Director of the EAPC Alberto G. Ugazio – President of the Italian Paediatric Society Adriana Turriziani – President of the Italian Palliative Care Society A Family’s PPC experience – Omar Leone Parent of child with rare disease (pending) Palliative care as children’s right – Kathy Foley Ethical issues – Richard Hain Welcome reception • • • • 19.30-‐20.30 th Thursday 29 November 2012 09.00-‐10.00 “Eligibility criteria” Moderators: Franca Benini and Guido Fanelli • Documents and guidelines – Finella Craig • From theory to practice – Ricardo Martino Alba • Open Discussion 10.00-‐10.30 Coffee Break 10.30-‐12.40 “Models” Moderators: Joan Marston and Gianlorenzo Scaccabarozzi Belarus – Anna Garchakova France – Chantal Wood Germany – Benjamin Gronwald Ireland – Julie Ling Italy – Franca Benini Romania – Delia Birtar Russia – Father Alexander Tkachenko Spain – Eduardo Quiroga Cantero Switzerland -‐ Eva Bergsträsser UK – Barbara Gelb Open Discussion 12.40-‐14.00 Lunch and poster visit 14.00-‐15.30 Working session 1 -‐ Moderator: Eva Bergsträsser • • • • • • • • • • • Working session 2 -‐ Moderator: Julie Ling • 5-‐6 Presentations • Open Discussion 15.30-‐16.00 Coffee Break 16.00-‐17.15 “Families” Moderators: Richard Hain and Bruno Marino • Grief and Bereavement – Angela Guarino and Grazia Serantoni • Perspective and role of famillies in PPC – Momcilo Jankovic • Open Discussion 3 FONDAZIONE MARUZZA LEFEBVRE D’OVIDIO ONLUS SCIENTIFIC BOARD Franca Benini (Chair) Chantal Wood (Co-chair) Ricardo Martino Alba Eva Bergsträsser Delia Birtar Lizzie Chambers Finella Craig Richard Hain Ulrika Kreicbergs Julie Ling Joan Marston Marcello Orzalesi Nicola Pirozzi Boris Zernikow CONFERENCE SECRETARIAT Phone:+ 39 06 3290609 Fax: + 39 06 36292743 [email protected] in collaboration with 1 European Congress on Paediatric Palliative Care st Rome, 28 - 30 November 2012 th Friday 30 November 2012 09.00-‐10.30 “Symptoms management” Moderators: Chantal Wood and Nicola Pirozzi • • • • Pain: new strategies for treatment – Stefan J. Friedrichsdorf Sleep disturbance and daytime agitation in severe neurological conditions – Boris Zernikow End of life management – Joanne Wolfe Open Discussion 10.30-‐11.00 Coffee Break 11.00-‐13.00 “Specific needs” Moderators: Margherita De Bac and Domenica Taruscio Needs in newborns – Umberto Simeoni Rare Diseases – Bruno Dallapiccola UNIAMO FIMR ONLUS -‐ Eurordis Neonatal screening in the Tuscany region – Giancarlo La Marca Providing access to knowledge and training in rare diseases – Samantha Parker Open Discussion 13.00-‐14.00 Lunch and poster visit 14.00-‐15.30 “Support and research” • • • • • • Moderators: Lizzie Chambers and Eugenio Mercuri Communication and psychological support – Ulrika Kriecbergs Support for the care team – Danai Papadatou Research in PPC – Myra Bluebond-‐Langner Open discussion 15.30-‐16.00 Coffee break • • • • 16.00-‐17.00 Working session 3 -‐ Moderator: Boris Zernikow Working session 4 -‐ Moderator: Luca Manfredini • 4 Presentations • Open Discussion 17.00-‐17.30 Closing remarks • Sheila Payne, Chairman EAPC • Francesco Bevere, Italian Health Ministry (pending) Deadlines for abstracts th • Submission deadline: 30 June, 2012 th • Final acceptance: 14 September, 2012 4