Masterclass on Cancer Patient Advocacy (DRAFT)
European Institute of Oncology,
Milan, Italy
June 12th 2004
| 9am | Welcome and introduction to Masterclass |
| Lynn Faulds Wood, Chair Steering Committee, ECPC; Alberto Costa, Director, European School of Oncology, Italy |
Politics and Cancer
| 9.15am | A Roundtable Discussion chaired by Lynn Faulds Wood with a panel including Umberto Veronesi, former Minister of Health, Italy, Else Borst-Eilers, former Minister of Health, the Netherlands and Franco Cavalli, Member of the Swiss Parliament and Head of the Oncology Institute for the South of Switzerland |
Spotlight on...
| 10.15am | European Charter of Patients Rights |
| Stefano Inglese, Active Citizenship Network/Tribunal for Patients' Rights, Italy | |
| 10.45am | Coffee |
Influencing the EU Health Agenda
Chaired by Tom Hudson, Europa Uomo, Ireland
| 11am | What cancer patients need to know about the European Union (EU) |
| Hildrun Sundseth, Advisory Board member, Merck Institute of Aging and Health, Belgium | |
| 11.30am | How patients can influence the EU |
| Jean Georges, European Patients Forum, Luxembourg | |
| 12md | Putting breast cancer on the European health agenda |
| Stella Kyriakides, President Europa Donna - the European Breast Cancer Coalition, Cyprus | |
| 12.20pm | Addressing deficiencies in the Clinical Trials Directive |
| Gordon McVie, European Institute of Oncology, Italy | |
| 12.40pm | Roundtable discussion |
| 1pm | Lunch |
Drug Regulation in Europe
Chaired byJan Geissler, Leukamie-Online, Germany
| 2pm | How cancer drugs are regulated in Europe |
| Isobelle Moulon, European Medicines Evaluation Agency, UK | |
| 2.20pm | Cancer drug regulation: a uniquely informed patient's perspective |
| Heide Preuss, Mamazone, Germany | |
| 2.35pm | How patients can contribute to drug regulation |
| Francois Houyez, EURORDIS, France | |
| 2.55pm | Accessing cancer drugs: a case study |
| Sandy Craine, Elizabeth Rees, CML Support, UK | |
| 3.15pm | Roundtable discussion |
| 3.30 | Coffee |
Advocacy-in-Action
Chaired by Claudia di Loreto, Aimac, Italy
| 3.50pm | What cancer patients need to know about patient advocacy |
| Kathy Redmond, European Cancer Patient Coalition, Italy | |
| 4.10pm | Getting a seat at the table |
| Lyn Swinburne, Breast Cancer Network, Australia | |
| 4.30pm | Strategic alliances |
| Lynn Faulds Wood, Bowel Cancer Campaign, UK | |
| 4.50pm | Information provision: the first step in patient advocacy |
| Francesco de Lorenzo, Aimac, Italy | |
| 5.10pm | Roundtable discussion |
| 5.30pm | Close of day 1 |
Sunday June 13th 2004
Strategic Communication
Chaired by Patricia Huijbregts, Dutch Federetion of Cancer Patient
| 9am | Cancer and the media |
| Gordon McVie, European Institute of Oncology, Italy | |
| 9.25 | E-advocacy |
| Gilles Frydman, President, ACOR.org - tbc | |
| 9.50 | Using the media to build global awareness: A case study |
| Jesme Baird, Roy Castle Lung Cancer Foundation, UK and GLCC | |
| 10.15 | Roundtable discussion |
Spotlight on...
| 10.30 | Fundraising: Tips on raising funds to sustain advocacy activities |
| Claudia McVie, Director of Fundraising, CLIC (Cancer and Leukaemia in Childhood, UK) | |
| 11am | Coffee |
Discrimination in the Workplace
Chaired by Ekke Buechler, Selbsthilfe Prostatakrebs, Austria and Lynn Fauld Wood, UK
| 11.30 | The European Union's anti-discrimination legislation: implications for cancer patients - Catherine Casserley, Senior Legislation Adviser, Disability Rights Commission, UK |
| 12md | Workplace discrimination: the reality for cancer patients - Roundtable discussion: |
| Ekke Buechler: the Austrian situation (10 mins); Elisabetta Iannelli: the Italian situation (10 mins); Feedback from other partecipants about their situation | |
| 12.45 | Closing address - where we go from here |
| Lynn Faulds Wood | |
| 1.00 | Lunch |
