1 European Congress on Paediatric Palliative Care Rome, November 2012 Acquario Comunale, Piazza Manfredo Fanti, 47 Draft 22nd March

Size: px

Start display at page:

Download "1 European Congress on Paediatric Palliative Care Rome, November 2012 Acquario Comunale, Piazza Manfredo Fanti, 47 Draft 22nd March"

Angelica Sarah Williams
6 years ago
Views:

1 Acquario Comunale, Piazza Manfredo Fanti, 47 Draft 22nd March Background 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. 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 mo appropriate solution: it provides effective, holiic 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- eablished 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 Miniry 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 Miniri (pending) Comune di Roma Società Italiana di Cure Palliative (SICP) Iituto Superiore di Sanità (ISS) Federazione Cure Palliative (FedCP) European Paediatric Association (EPA) (pending) International Children s Palliative Care Network (ICPCN) Together for Short lives Main Supporters Recordati Pharmaceutical Group Orphan Europe Silversea

2 Scientific Committee: Chantal Wood (Co- chair) Faculty Bruno Dallapiccola Sheila Payne Adriana Turriziani Alberto G. Ugazio 2

3 Wednesday 28 th November Initutional welcome address 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 Welcome reception Thursday 29 th November Eligibility criteria Moderators: Franca Benini and Guido Fanelli Documents and guidelines From theory to practice Models Moderators: and Gianlorenzo Scaccabarozzi Belarus Anna Garchakova France Chantal Wood Germany Benjamin Gronwald Ireland Italy Franca Benini Romania Russia Father Alexander Tkachenko Spain Eduardo Quiroga Cantero Switzerland - UK Barbara Gelb Lunch and poer visit Working session 1 - Moderator: Working session 2 - Moderator: 5-6 Presentations Families Moderators: and Bruno Marino Grief and Bereavement Angela Guarino and Grazia Serantoni Perspective and role of famillies in PPC Momcilo Jankovic 3

4 Friday 30 th November Symptoms management Moderators: Chantal Wood and Pain: new rategies for treatment Stefan J. Friedrichsdorf Sleep diurbance and daytime agitation in severe neurological conditions End of life management Joanne Wolfe Specific needs Moderators: Margherita De Bac and Domenica Taruscio Needs in newborns Umberto Simeoni Rare Diseases Bruno Dallapiccola Neonatal screening in the Tuscany region Giancarlo La Marca Providing access to knowledge and training in rare diseases Samantha Parker Lunch and poer visit Support and research Moderators: and Eugenio Mercuri Communication and psychological support Ulrika Kriecbergs Support for the care team Danai Papadatou Research in PPC Myra Bluebond- Langner Open discussion Coffee break Working session 3 - Moderator: Working session 4 - Moderator: Luca Manfredini 4 Presentations Closing remarks Sheila Payne, Chairman EAPC Marco Spizzichino, Italian Health Miniry Deadlines for abracts Submission deadline: 1 June, 2012 Final acceptance: 14 th September,

5 Official Partners : With the auspices of Pending Presidenza della Repubblica Presidenza del Consiglio dei Miniri Comune di Roma 5

4 th Global Gathering - The Maruzza Congress on Paediatric Palliative Care Rome, 24 th - 27 th October 2018

4 th Global Gathering - The Maruzza Congress on Paediatric Palliative Care Rome, 24 th - 27 th October 2018 The purpose of the 4 th Maruzza Congress on Paediatric Palliative Care is to engage professionals