1. The Maruzza Lefebvre D’Ovidio Foundation Silvia Lefebvre D’Ovidio

2. My family Apuania Shipyard Marina di Carrara (Italy) July 1962

3. About the Foundation Maruzza Lefebvre D’Ovidio was just forty years old when she passed away in 1989. During the final months of her illness she became aware of the enormous difficulties encountered by individuals and their families coping with incurable illness and expressed a desire to provide help and support for others facing her same destiny. In 1999 the Fondazione Maruzza Lefebvre D’Ovidio Onlus was established with the aim of bringing to light Maruzza’s dream of providing support and care for incurable patients whilst respecting their wishes, dignity and quality of life.

4. Vision “Palliative care: improving the knowledge, the culture and the care”

5. Mission The Maruzza Foundation strives to: establish the right to access palliative care for all those who need it influence, enhance and promote excellence in palliative care nationally and internationally by supporting research, training and raised awareness. promote, generate and disseminate new knowledge and evidence in palliative care aimed at achieving a better quality of life for people affected by incurable conditions

6. Palliative care Palliative care is the active, total care of the patients whose disease does not respond to curative treatment. Palliative care aims to maximise the quality of life and relieve the suffering of critically ill patients and their families. It addresses the clinical needs of patients, such as pain and symptoms, as well as the emotional, social and spiritual needs of those affected, during the course of incurable illness into bereavement.

7. Our goals in palliative care The Foundation seeks to improve the evidence- based approach to palliative care, focusing its activities on the most vulnerable of incurable patients: children and elderly persons. The Foundation intervenes at different levels, with five specific activities: Advocacy and the creation of partnerships (institutional, national, international, etc..) The development of palliative care networks Communication and raised awareness Training The promotion and support of research

8. Children project Each year in Italy about 12.000 babies, children and adolescents require specialised palliative care (around 1.200 of them die) Goals of the project are to: a.Ensure quality of life for seriously ill children b.Establish the same rights and dignity for children as those acknowledged for adults at the end of their life c.Limit hospitalization and provide multidisciplinary in home care d.Establish child-specific hospices e.Integrate paediatric palliative care into National Health Care policy

9. Children project: milestones 2004 : the Maruzza Foundation’s Board of Trustees chooses the Children Project as its main activity February 2006 : the Consensus Conference “Children who will not get better” advocated by the President of the Parliamentary Commission for Children March 2006 : the Italian Ministry of Health instituted a technical commission with the aim of compiling a technical document establishing palliative care needs for neonates, children and adolescents with incurable illnesses March 2006 : the Italian Ministry of Health added to the National Health Bill 2006-2008 specific indications relative to paediatric palliative care November 2006 : the Italian Ministry of Health licensed the final document “Palliative care for neonates, children and adolescents”

10. Children project: milestones March 2007 : The conference “Children who will not get better - the right to access palliative care services” June 2007 : the governmental agency responsible for relations between the central and regional governments approve a bill regarding the institution of a regional network of pediatric palliative care services September 2007 : the signing of a Memorandum of Understanding by which the Maruzza Foundation and the Italian Ministry of Health consent to work together for the development of a coordinated and comprehensive venture denominated ‘The Children Project’ March 2010 : Approval of the Italian Law n. 38/2010, with the paediatric …. October 2010 : Sign of the MoU with EAPC to influence and enhance the provision of palliative care services for children

11. 1 ST EUROPEAN CONGRESS ON PAEDIATRIC PALLIATIVE CARE 28 th -30 th November 2012 Rome - Italy ACQUARIO ROMANO in collaboration with

12. What we have achieved Children in Italy have the legal right to access child-specific (0-17 years) palliative care Each of the Italian regions must implement a network for the delivery of paediatric palliative care and pain management Thanks to a MoU with the Ministry of Health, the Maruzza Foundation is responsible for assisting and supporting the regions in the development of their paediatric palliative care networks The Maruzza Foundation is responsible for the coordination of the Committee for the Development of PPC, under the Commission responsible for the implementation of the law 38 2010 Over 300 delegates from 40 different countries gathered in Rome at the 1 st European Congress on Paediatric Palliative

13. Budget Project funding Operational costs and wages Human resources 6 internal workers 15 consultants Annual budget: less than 600.000 euros

14. Accountability We are responsible for: Achieving our mission Leadership in areas of public interest Transparency and financial accountability Ethical fundraising Efficiency and quality Independence

15. The Foundation in a nutshell A clearly defined mission The involvement of established experts from the palliative care sector Collaboration with institutions Adequate resources A professional work force Careful budgeting The creation of networks and partnerships (also with similar organizations) The assessment of results, the review and amendment of strategies when necessary

16. Thank you We make a living by what we get but we make a life by what we give (Winston Churchill)