OBJECTIVES OF THE MEETING

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1 OBJECTIVES OF THE MEETING The Second European LAM Conference is an international meeting with the purpose of getting insights into the new results of research and sharing with patient s community and educational objectives. Working together for increasing knowledge and resources for this rare disease. Our proposal is a new challenge for patients and the professional community: the conference seeks scientific excellence from a comprehensive view focused on patient s interests in combination with educational goals not only for clinical practice but also for daily patient s life. This Second LAM Conference is integrated with the Rare Respiratory Disease Year s activities program by The Spanish Society of Pulmonology and Thoracic Surgery. ORGANIZED BY AELAM and SEPAR

2 Dr Eusebi Chiner Secretary of SEPAR, Hospital Univ. San Juan, Alicante Dr Estrella Fernández President of SEPAR Congress Committee, Hospital Univ. Dr Peset, Valencia Dr Beatriz Lara Coordinator of the SEPAR Year of Rare Respiratory Disease, Hospital Univ. Arnau de Vilanova, Lleida Dr Antonio Román Hospital Univ. Vall d Hebron, Barcelona Mrs Mª Luz Vila President of AELAM and Coordinator of the SEPAR Year of Rare Respiratory Disease, Vigo Mrs Claudia Delgado Director of FEDER, Spanish Federation of Rare Disease, Madrid

3 15.00/16.00 Registration 16.00/18.00 CLINICAL INSIGHTS OF LAM Session Chairs: E Henske and P Ussetti 16.00/16.30 Lessons from LAM F McCormack, MD 16.30/17.00 LAM Guidelines for doctors and patients, what is the next step? V Cottin, MD, PhD 17.00/17.30 Clinical and Cellular Phenotyping in LAM: Identification of Patient and LAM Cell Subtypes J Moss, MD, PhD 17.30/18.00 Discussion 18.00/18.30 WELCOME AND INAUGURAL ACT Major of Barcelona, Honorable Mr Xavier Trias President of SEPAR, Dr Pilar de Lucas President of AELAM and Coordinator of SEPAR ERM Year, Mrs Mª Luz Vila 18.30/20.00 PATIENTS SESSION. ONGOING ACTIONS FOR PATIENTS Session Chairs: ML Vila and I Bassi 18.30/18.45 Spanish handbook for LAM patients A Romero, MD, and M Lupon, DUE 18.45/19.00 Spanish registry of LAM ISCIII-SEPAR A Casanova, MD 19.00/19.30 European LAM Federation I Bassi 19.30/20.00 Discussion WELCOME COCKTAIL

4 09.00/13.00 BIOLOGY OF LAM Session Chairs: J Moss and MA Pujana 09.00/09.30 Metastatic properties and cellular origin of LAM MA Pujana, PhD 09.30/10.00 Genetics of LAM, TSC mutations E Henske, MD 10.00/10.30 mtor signalin and future treatments F McCormack, MD 10.30/11.00 Discussion 11.00/11.30 Coffee break /12.00 Vascular effects of Estrogens C Hermenegildo, PhD 12.00/ Animal model in LAM V Krymskaya, PhD 1230 /1300 Discussion 13.00/14.30 LUNCH

5 14.30 /16.30 ONGOING LAM TRIALS: THE FUTURE HOPE FOR PATIENTS Session Chairs: V Krymskaya and A Roman 14.30/15.00 Doxycycline S Johnson, MD 15.00/15.30 Sirolimus and Letrozol F McCormack, MD 15.30/16.00 Sirolimus and Hydroxychloroquine E Henske, MD 16.00/16.30 Discussion 16.30/17.00 Coffee break 17.00/18.15 LUNG TRANSPLANTATION AS LAST STEP TODAY AND REPARATION FOR TOMORROW Session Chairs: B Lara and S Johnson 17.00/17.30 Lung Transplantation in LAM A Román, MD 17.30/18.00 Lung Regeneration R Farré, PhD 18.00/18.15 Discussion 18.15/18.45 CLOSE

6 PARTICIPANTS Iris Bassi. President of LAM Italia Álvaro Casanova, MD. Pulmonology Department. Hospital Universitario del Henares, Madrid Vincent Cottin, MD, PhD. Hôpital cardiovasculaire et pneumologique Louis Pradel, Bron, France Ramón Farré, PhD.CIBERES. Facultad de Medicina Universidad de Barcelona Elisabeth Henske, MD. Brigham and Women s Hospital, Boston USA Carlos Hermenegildo, PhD. INCLIVA Fundación Investigación Hospital Clínico de Valencia Simon Johnson, MD. Nottingham University Hospital, UK Vera Krymskaya, PhD. University of Pennsylvania, USA Beatriz Lara, MD. Coordinator of the SEPAR Year of Rare Respiratory Disease, Pulmonology Department. Hospital Universitari Arnau de Vilanova, Lleida Meritxell Lupón. DUE, Barcelona Francis McCormack, MD. University of Cincinnati Medical Center, USA Joel Moss, MD, PhD. NHLBI - National Institutes of Health. Bethesda, USA Miguel Ángel Pujana, PhD. Institut Català d'oncologia IDIBELL, Barcelona Antonio Román, MD. Unidad de Trasplante Pulmonar, Servicio de Neumología. Hospital Universitario Vall d Hebron, Barcelona Ana Romero, MD. Hospital Universitario Virgen de las Nieves, Granada Piedad Ussetti, MD. Pulmonology Department. Hospital Universitario Puerta de Hierro, Madrid MªLuz Vila. President of AELAM and Coordinator of the SEPAR Year of Rare Respiratory Disease, Vigo

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