START PROGRAM: STATE-OF-THE-ART ONCOLOGY IN EUROPE RARECARENet kick-off Luxembourg – July 13, 2012 Chairperson: Dr. Lisa Licitra Fond. IRCCS Istituto Tumori Milano

Information network on rare cancers PROFESSIONAL AREA (FOR CANCER SPECIALISTS) - One chapter on each existing neoplasm (in English) - One chapter on each existing neoplasm (in Italian) PUBLIC AREA (FOR NON SPECIALISTS) - Information sections in Italian on: a) single neoplasms b) cancer-related issues (general information on cancer, antiemetic therapy, …) ) THE START WEBSITE (

Information network on rare cancers MEAN OF ACCESSES TO START WEBSITE JANUARY – JUNE ( hits)

Information network on rare cancers Standard ("standard", "recommended" [or "not recommended") - This can be considered a conventional choice for the average patient. Individualized  suitable for individual clinical use  investigational or suitable for individual clinical use - This is not a standard option, but it can be a reasonable choice for the individual patient. The patient should be informed that the option is not standard and the decision must be shared with the patient. Investigational only - This is something which, in principle, can be offered to the patient only within a clinical study. CLINICAL RECOMMENDATIONS TYPE OF OPTION

Information network on rare cancers OBJECTIVE – WP 4-5 Developing at least 10 chapters on selected rare cancers (5 new ones and updating 5 existing ones). Providing the laymen's version. Developing a database on very rare cancer with access restricted to physicians only.

Information network on rare cancers ACTIONS ALREADY UNDERTAKEN SELECTED 5 NEW START CHAPTERS - Thymus - Oral cavity - Nasal cavity - Head and neck mucosal melanoma - Small intestine SELECTED 5 START CHAPTERS TO BE UPDATED - Chronic Lymphocytic Leukemia - Cholangiocarcinoma - Gastrointestinal Stromal Tumours (GISTs) - Hepatocellular carcinoma - Langerhans cell histiocytosis

Information network on rare cancers Rare Tumors I Adult acute lymphoblastic leukaemia (ALL) Adult acute myeloid leukaemia (AML) Kaposi's sarcoma Non-Hodgkin's lymphoma Adult neuroectodermal tumours of posterior fossa (Medulloblastoma) and of supratentorial sites Anaplastic astrocytoma in adults Ependymoma Glioblastoma multiforme Low-grade astrocytoma Meningioma Oligodendroglioma Adult neuroectodermal tumours of posterior fossa (Medulloblastoma) and of supratentorial sites Anaplastic astrocytoma in adults Ependymoma Glioblastoma multiforme Low-grade astrocytoma Meningioma Oligodendroglioma Cancer of the pancreas Chronic Lymphocytic Leukemia Cancer of the anal region

Information network on rare cancers Rare Tumors II Cholangiocarcinoma Cancer of the penis Germ-cell tumours of the testis Cancer of the endometrium Ovarian cancer Cancer of nasopharynx Cancer of the larynx Cancer of the oropharynx Major and minor salivary gland tumours Thyroid cancer Hemophagocytic lymphohistiocytosis Histiocyte Disorders Langerhans cell histiocytosis Rosai-Dorfman disease Hepatocellular carcinoma Childhood Medulloblastoma Multiple myeloma Neuroblastoma Ewing's sarcoma Gastrointestinal Stromal Tumours (GISTs) Soft tissue sarcomas Wilm’s Tumour