EUROPEAN LAM CONFERENCE

Transcription

1 The objective of the medical / scientific conference is to provide an update on current researches and clinical trials againts lymphangioleiomyomatosis, as well as establish the best strategic steps to take to work towards an effective treatment of the disease in the shortest possible timeframe. Participants: Dottoressa Domenica Taruscio Istituto Superiore di Sanità, Roma Dottor Renzo Tondo Presidente della Regione Friuli Venezia Giulia Dottor Vladimir Kosic Assessore alla Sanità della Regione Friuli Venezia Giulia Dottoressa Nora Coppola Assessorato alla Sanità della Regione Friuli Venezia Giulia Dottor Bruno Bembi Centro Regionale delle Malattie Rare Regione Friuli Venezia Giulia Dottoressa Elisabeth Henske Direttrice del Centro di Ricerca e Clinica LAM del Brighham and Women-s Hospital, Boston, Massachusetts, USA Dottor Joel Moss M.D., Ph.D., Deputy Chief, Translational Medicine Branch, National Heart, Lung, and Blood Institute National Institutes of Health Dottor Francis Mc Cormack University Hospital Cincinnati, Ohio Branch Pulmonoray Critical Care e Direttore Scientifico della The Lam Foundation, USA Dottoressa Caroline Heckman Università di Helsinki, Finlandia Dottor Raymond Yeung University of Washington, USA Dottoressa Shuger Lucia University of Chicago Dottoressa Cheryl Walker University of Texas, MD Anderson Cancer Center, USA Dottoressa Judy Black University of Sidney, Australia Dottor Sergio Harari Osp. San Giuseppe, Unità operativa di Pneumologia, Milano Dottor Marco Confalonieri Università di Trieste Professor Carlo Albera Università di Torino Dottor Federico Rea Università di Padova Professor Marco Chilosi Università di Verona Professor Franco Bonetti Università di Verona Professor Pier Paolo di Fiore Ifom, Milano Professor Paolo Casali Istituto Tumori, Milano Dottoressa Silvia Stacchiotti Fondazione IRCCS Milano Professoressa Graziella Pellegrini Università di Modena Dottor Simon Johnson University of Nottingham, UK Dottoressa Vera Krymskay University of Pennsylvania Medical Center Dottoressa Elisabeth Thiele Director Carol and James Herscot Center for Tuberous Sclerosis Complex Cambridge, Massachusetts, USA Dottor David Sabatini Whitehead Institute, Cambridge, Massachusetts, USA Dottoressa Jilly Evans Dr. Jilly Evans, Director in the Department of Cardiovascular Diseases, Merck & Co., San Diego California Geraldine Finlday MD Pulmonary and Critical Care Division, New England Medical Center, Tufts University School of Medicine, Boston, MA Delegazioni Organizzazioni LAM in Europa e Oltreoceano LAM Austria LAM Germania LAM Action / UK FLAM / LAM Francia LAM Foundation / USA The LAM Treatment Alliance LAM Australia LAM Nuova Zelanda Delegazioni Organizzazioni Sclerosi Tuberosa Associazione di Sclerosi Tuberosa, AST, Italia Presidente LAM Italia LAM Italia - Via Udine 33/ Pavia di Udine - Tel

2 Dear Sir or Madam, We are pleased to provide you with the attached material where you can learn more about our Association LAM Italia as well as find out additional information about our current project. We are currently engaged in the planning of the First European LAM Conference which will take place in Udine, Italy, on the 1st, 2nd and 3rd of October In order to best organize this event, we are kindly asking your support as well. At this conference, a number of researchers, clinicians and experts on LAM will meet in Udine to present to an international audience of professionals and LAM association representatives their updates on research and clinical trials. The majority of the speakers have already published on the subject of LAM as well as on other relevant pathologies such as lung cancer and tuberous sclerosis. The main objective of the Conference is to discuss and establish the best strategy to work towards an effective treatment for lymphangioleiomyomatosis (LAM) in the shortest possible timeframe. Please find attached documents which can provide you more information on our Association. We hope to be able to be in contact with you soon. Please don t hesitate to contact us should you need further information. Kind regards. D.ssa Presidente LAM Italia Dir or Mobile Fax e.mail: iris.bassi@libero.it skype account: irisbassi

3 All. 2) Presentation of the project 1. Name of the project: / OCTOBER Name of the main contact for the project: Dr., Chairman of LAM Italia 3. Brief description of the project: a) Objectives: The objective of the conference is to provide an update on current researches and clinical trials against lymphangioleiomyomatosis, a rare and fatal disease for which at the moment there is no known cure. This uncommon condition affecting a number of organs requires a multi-disciplinary approach on an international level. At this event, a number of researchers, clinicians and experts on LAM from across the globe will meet to discuss and establish the best strategy to work towards an effective treatment for lymphangioleiomyomatosis b) Audience: Member of the national and international scientific community, in particular clinicians, pneumologists, researchers from Italy, Europe and the rest of the world. In particular, professionals who are involved in rare diseases, cancer and regenerative medicine. The speakers invited to present at the Conference have all thorough experience in LAM c) Participants: Local Authorities Bruno Bembi / Centro Regionale delle Malattie Rare Regione Friuli Venezia Giulia Nora Coppola / Assessorato alla Sanità della Regione Friuli Venezia Giulia Vladimir Kosic / Assessore alla Sanità della Regione Friuli Venezia Giulia Domenica Taruscio / Istituto Superiore di Sanità, Roma Clinicians and Pneumologists Paolo Casali / Istituto Tumori, Milano, Italy Sergio Harari / Osp. San Giuseppe, Unità operativa di Pneumologia, Milano, Italy Simon Johnson / University of Nottingham, UK Francis Mc Cormack / University Hospital Cincinnati, Ohio Branch Pulmonoray Critical Care e Scientific Director of The Lam Foundation, USA Joel Moss / Translational Medicine Branch, National Heart, Lung, and Blood Institute National Institutes of Health, Bethesda, USA Federico Rea / Università di Padova, Italy Silvia Stacchiotti / Fondazione IRCCS Milano, Italy Researchers Judy Black / University of Sidney, Australia Franco Bonetti / Università di Verona, Italy

4 All. 2) Marco Chilosi / Università di Verona, Italy Pier Paolo di Fiore / Ifom, Milano, Italy Caroline Heckman / University of Helsinki, Finland Elisabeth Henske / Center for LAM Research and Clinical Care, Brigham and Women s Hospital, Boston, USA Vera Krymskay / University of Pennsylvania Medical Center, USA Shuger Lucia / University of Chicago, USA Graziella Pellegrini / Università di Modena, Italy David Sabatini / Whitehead Institute, Cambridge, Massachusetts, USA Elisabeth Thiele / Carol and James Herscot Center for Tuberous Sclerosis Complex Cambridge, Massachusetts, USA Cheryl Walker / University of Texas, MD Anderson Cancer Center, USA Raymond Yeung / University of Washington, USA Representatives from LAM Associations LAM Australia, LAM Austria, FLAM / LAM France, LAM Germany, LAM Italia, LAM New Zeland, LAM Spain, LAM Action / UK, LAM Foundation / USA, The LAM Treatment Alliance d) Structures: - Location of the conference - Location for the catering - Overnight stay e) Expected results: Further develop knowledge and understanding of lymphangioleiomyomatosis through the exchange of information within the international scientific community. Define strategies and ways to apply them in the near future in order to find a treatment for this disease 4. Location: Udine. Further details on location will be provided 5. Date: 1st, 2nd and 3rd of October Overview of costs: Expected costs of approx. e 50,000 Firma Legale rappresentante Data

5 All. 1) Summary of Information LAM Italia 1. Name of the entity requesting financial support: Association LAM Italia (Italian Association Lymphangioleiomyomatosis) 2. Registered office: Via Udine, 33/4, Pavia di Udine 33050, Italy Founding date: 7 August Main office: Via Udine, 33/4, Pavia di Udine 33050, Italy 4. Tax code: C.F Legal form: Non profit charity organization 6. Juridical form: Awaiting to be member of the national registry of non profit charity organizations 7. Beginning of activity: Since Member of: Charity organizations of Udine, Italy 9. Legal representative: Dr., Chairman of LAM Italia 10. Brief description of the main activities of the Association: LAM Italia promotes research in order to find a treatment against Lymphangioleiomyomatosis (also known as LAM). One of the objectives of LAM Italia is to provide support, information and encouragement to patients and their families. In addition, LAM Italia collaborates with other international LAM associations, organizing conferences directed to patients and the medical community (clinicians, researchers, etc.). LAM Italia has been constituted as a charity organization in August 2009; however, its activities have started already in late 2008, when the First National LAM Conference has taken place in Udine (Italy) with the participation of 150 among patients, medical professionals, doctors, researchers and clinicians across Italy. Further information is available on LAM Italia web page.