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2018 Program Book www.nf-paris2018.com 2018 Joint Global Neurofibromatosis Conference · Paris, France · November 2-6, 2018 | 1 ENDORSEMENTS / PATRONAGE Endorsements & Patronage List The conference is endorsed by the following organisations: ERN EURACAN ERN GENTURIS FIMARAD RESAP Réseau Sarcome de l’Assistance publique The conference is under the High Patronage of the following Institutions: Other Supports: CONTENTS Table of Contents Welcome Message ................................................................................................... 4 Organization ............................................................................................................. 5 Schedule at a Glance ................................................................................................ 7 Conference Co-Chairs .............................................................................................. 9 Keynote Speakers .................................................................................................. 11 Agenda .................................................................................................................. 14 Ancillary Meetings .................................................................................................. 26 Participants ............................................................................................................ 30 Conference Venue Floor Plan .................................................................................. 37 Social Program: Networking Session, Concert & Dinner Cruise ............................... 38 Nearby Restaurants ................................................................................................ 39 List of Chairs and Scientific Committee ................................................................... 41 Sponsors ............................................................................................................... 42 DOWNLOAD THE NF-PARIS 2018 MOBILE APPLICATION The app is available for iPhone, iPad, Blackberry and Android devices and will enable you to consult the latest news on the event, read about the sessions and plan your visit WIFI NETWORK Please connect to the ASTRAZENECA WiFi Password: NF-PARIS The mobile application and the WiFi are kindly sponsored by 2018 Joint Global Neurofibromatosis Conference · Paris, France · November 2-6, 2018 | 3 Dear NF Conference Attendees: On behalf of the Children’s Tumor Foundation, the European Neurofibromatoses Group and the Association Neurofibromatoses et Recklinghausen, we want to welcome you to the 2018 Joint Global NF Conference. It is very fitting that this unique meeting is being held during CTF’s 40th anniversary year in the beautiful, historic city of Paris, the City of Light, a global center of art, architecture, gastronomy and fashion. And for the next several days, the global epicenter of neurofibromatosis research, clinical care, patient education and advocacy. With a nod to the famous American composer, George Gershwin, it was Pierre Wolkenstein’s dream some years ago to have “An American in Paris,” in a symbolic message of global unity. Annette Bakker, president of the Children’s Tumor Foundation, shared that dream and agreed for CTF to be that American in Paris, and to bring its annual international conference to this glorious European capital. So for the first time, CTF, whose meeting has grown over the years to over 400 participants, agreed to join forces with the European NF Group, and the NF2 and schwannomatosis specialists with their bi-annual State of the Art meeting, to host the largest-ever gathering of the top NF researchers and clinicians in the world. This meeting will also play host to an international group of patients and patient advocates bringing the participant level to over 700! Much information will be shared over the coming days—from the promise of MEK inhibitors and the selumetinib clinical trials to the outcomes of CTF-sponsored pivotal workshops that have been held this year—a review and revision of the diagnostic criteria of the neurofibromatoses, and an animal model workshop that considered and classified NF-specific animal models, including the newly-developed and promising pig models. We have expanded the platform for experts in psychosocial issues to engage attendees in a broader discussion of the quality of life of NF patients, and, for the first time, a live surgery workshop is being offered that will have three different operations to view. We want to remind our participants that one of the goals of this meeting is to foster strong and lasting relationships. While you are here, enjoy the company of old friends, make some new friends, celebrate each other’s successes and discoveries, and build on this knowledge. This is an opportunity to share science amongst friends—science without borders. NF has No Frontiers. Nor do we, the global NF community. The next several days will be intellectually challenging, but we encourage you to engage in the discourse, challenge the information that will be put forth, and strive to make the science better together to reach the ultimate goal—to end NF. Bienvenue à Paris—Welcome to Paris! Sincerely, ANNETTE BAKKER President, Children’s Tumor Foundation PIERRE WOLKENSTEIN President of the Joint Global NF Conference MAURIZIO CLEMENTI President, European Neurofibromatoses Group JEAN MICHEL DUBOIS President, Association Neurofibromatoses et Recklinghausen 4 | 2018 Joint Global Neurofibromatosis Conference · Paris, France · November 2-6, 2018 ORGANIZATION Conference & Supporting Institutions ORGANIZATION CONFERENCE ORGANIZATIONAL CHART President of the Joint Global Meeting for Neurofibromatoses: Local Organizing Committee: Pierre Wolkenstein (Créteil, France) Pierre Wolkenstein (Créteil, France) Salah Ferkal (Créteil, France) European Chairs: Françoise Tailhardat (Créteil, France) Michel Kalamarides (Paris, France) Benoît Funalot (Créteil, France) Eric Pasmant (Paris, France) Marie-Laure Armand (Créteil, France) Michel Kalamarides (Paris, France) USA Chairs: Eric Pasmant (Paris, France) Lu Q. Le (Dallas, Texas, USA) Piotr Topilko (Paris, France) Ludwine Messiaen (Birmingham, Albama, USA) Laurent Lantieri (Paris, France) Philippe Decq (Paris, France) Children’s Tumor Foundation: François Doz (Paris, France) Annette Bakker (President Chief Scientific Officer) (NYC, New York, USA) Jacques Grill (Villejuif, France) Patrice Pancza (VP, External Relations) (NYC, New York, USA) International Relationships: Marco Giovannini (Counselor) (Los Angeles, USA) Vincent Riccardi (International Ambassador) (La Crescenta, USA) THE SUPPORTING INSTITUTIONS CHILDREN’S TUMOR FOUNDATION Officers - Board of Directors Richard Horvitz - Chair Annette Bakker, PhD - President and Chief Scientific Officer Tracy Galloway - Vice Chair Randall Stanicky - Treasurer Gabriel Groisman - Secretary Bruce R. Korf, MD, PhD - Chair, Medical Advisory Committee Linda Halliday Martin - Chair Emeritus Members - Board of Directors Honorary Directors Daniel T. Altman John McCarthy Suzanne Earle Rob Brainin Steven McKenzie Michie O’Day William G. Brooks Laura Perfetti Alan H. Robbins, MD Dan Gilbert Michael Peterson Carolyn E. Setlow John Golfinos, MD Kenneth C. Rudd Nate Walker Matthew Hay Rachel B. Tiven Edward M. Stern, Pro Bono Counsel Chad Leathers David Viskochil, MD, PhD Allan E. Rubenstein, MD, Director of Medical Affairs, Emeritus Stuart Match Suna Margaret (Peggy) Wallace, PhD 2018 Joint Global Neurofibromatosis Conference · Paris, France · November 2-6, 2018 | 5 ORGANIZATION Supporting Institutions EUROPEAN NEUROFIBROMATOSES GROUP Board of Directors Maurizio Clementi (Padua, Italy) - President Gareth Evans (Manchester, UK) Pierre Wolkenstein (Paris, France) - Secretary General Conxi Lázaro (Barcelona, Spain) Thijs van der Vaart (Rotterdam, Netherlands) - Treasurer Juha Peltonen (Turku, Finland) Hildegard Kehrer-Sawatzki (Ulm, Germany) Meena Upadhyaya (Cardiff, UK) Annette Bakker (New York, USA) Ali Varan (Ankara,Turkey) ASSOCIATION NEUROFIBROMATOSES ET RECKLINGHAUSEN Board of Directors Jean Michel Dubois - President Julien Thurion - Treasurer Mireille Bourlier - Secretary Valérie Baudet Sophie Devey Peggy LeBoeuf Rosemarie Picot Sandrine Sicard Renée Vaillant Jean-Pierre Villette NF FRANCE: NATIONAL REFERAL CENTER FOR NEUROFIBROMATOSIS Pierre Wolkenstein Michel Kalamarides Patrick Combemale 6 | 2018 Joint Global Neurofibromatosis Conference · Paris, France · November 2-6, 2018 SCHEDULE Schedule At-A-Glance TIME EVENT LOCATION 08:30 12:30 OPTIONAL SATELLITE SYMPOSIUM: Developing Therapeutics for Cutaneous Neurofibromas PETIT AMPHI 13:30 15:30 EDUCATIONAL SYMPOSIUM (PART 1) – CLINICAL: Diagnostic Challenges GRAND AMPHI 13:30 15:30 ANIMAL MODELS (PART 1) – BASIC: Pathology of Genetically Engineered NF Animal Models: Consensus Report ROOM 201 15:45 16:10 Break ROOM 8 16:10 18:15 EDUCATIONAL SYMPOSIUM (PART 2): Management Challenges GRAND AMPHI FRIDAY 2 NOVEMBER 16:00 18:30 ANIMAL MODELS (PART 2): Pathology of Genetically Engineered NF Animal Models: Consensus Report ROOM 201 13:30 18:00 POUR LES PATIENTS ET LEURS FAMILLES: ETAT ACTUEL DES SOINS CLINIQUES ET DE LA RECHERCHE PETIT AMPHI 13:30 18:00 FOR PATIENTS AND FAMILIES: CURRENT STATE OF CLINICAL CARE AND RESEARCH (English Version) ROOM 69 08:30 08:40 Welcome Remarks GRAND AMPHI Platform Talk: SPRINT: Phase II Study of the MEK 1/2 Inhibitor Selumetinib (AZD6244, ARRY-142886) in Children with 08:40 09:00 GRAND AMPHI Neurofibromatosis Type 1 (NF1) and Inoperable Plexiform Neurofibromas (PN) 09:00
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