R&D MAKING A FUTURE
October 12, 13, 14 2018Recinto ferial Luis Adaro-FIDMA, Gijón, Asturias, Spain
SCIENTIFIC COMMITTEE
Carlos López OtínAna María Aranda Iriarte
Francisco Morales Domínguez
Florencio Vicente Castro
Isabel Ruiz Fernández
Guillermo Ibaseta Díaz
Pilar Cagiao Vila
Juan Carlos Rial Basalo
Belén Pimentel de Francisco
Guillermo de la Cueva Méndez
Liliana Santamarina Rabanal
Socorro Martínez Ríos
Carlos León Rodríguez
ORGANIZATION
Fundación ALPE AcondroplasiaFRIDAY, OCTOBER 12TH 2018
08.30-09.00 REGISTRATION
09.15-10.00 CLINICAL GENETICS OF SKELETAL DYSPLASIAS
Karen Heath
Sérgio de Sousa
Joana Bengoa
Moderator: Carolina Lemos
10.05-10.55 FUTURE CHALLENGES IN SKELETAL DYSPLASIA
Ravi Savarirayan
Laurence Legeai-Mallet
Moderator: Belén Pimentel
11.00 OPENING
Jesús Ángel Celada Pérez, Director General de Políticas de Discapacidad, Ministerio de Sanidad, Consumo y Servicios Sociales
Pilar Varela Díaz, Consejera de Servicios y Derechos Sociales, Principado de Asturias
Montserat López Moro, Concejala de Educación y Cultura, Ayuntamiento de Gijón
Representative Fundación ALPE Acondroplasia
11.15-11.45 COFFEE BREAK
11.45-12.30 SPORTS WITH NO LIMITS
Aladino Pandiella
Álvaro Jiménez
Raúl Micó
Miguel Monteiro
Moderator: Juan Arribas
12.35-13.35 OVERVIEW OF CURRENT RESEARCH ON ACHONDROPLASIA
Encarna Guillen
Avner Yayon
Elvire Gouze
Laurence Legeai-Mallet
Morrys Kaisermann
Moderator: Ana Aranda
13.40-14.55 LUNCH
15.10-16.00 CREATING A POSITIVE IDENTITY. CREATING RESILIENCE
Saulo Fernández Arregui
Paloma González Peña
Miguel Ángel Carrasco Ortiz
Moderator: Yolanda Sánchez
Fernando Santos, Hospital La Paz de Madrid
Jorge Knörr, Sant Joan de Deu Hospital, Barcelona
Virginia Fano, Hospital Garrahan de Buenos Aires
Antonio Leiva, Hospital Virgen de la Victoria, Málaga
Joana Bengoa, Necker Institute, Paris
William Mackenzie, Nemours Hospital for Children de Baltimore
Moderator: Carlos León
17.45-18.30 PHYSICAL MEDICINE AND REHABILITATION
Frances Guardo
Marisa Felices
Socorro Martínez
Moderator: Carmen Barreal Vega
18.35-20.00 THE ROLE OF THE FATHER AND THE VOICE OF THE YOUTH
Pedro Sagastizábal
Jon Anda Landa
Fernando Vizcaíno
Emilio Ramírez Gómez
José García Cidoncha
Our youths
Moderators: Fidel Páramo and Cristina González
SATURDAY, 13TH OCTOBER 2018
09.30-10.50 MULTIDISCIPLINARY ASSESSMENT: MAIN ISSUES
Ravi Savarirayan
Guirish Solanki
Juan Carlos Rial Basalo
Christoph Kampann
Mary Theroux
Moderator: Antonio Leiva
10.55-11.55 DISABILITY RIGHTS IN THE 21ST CENTURY
Raúl Gay Navarro
Felipe Orviz Orviz
José María Fernández de Villalta
Alana Micaelle Cavalcante Carvalho
Representative European Union
Moderator: Almudena Cueto
12.00-12.30 COFFEE BREAK
12.30-14.10 ORTHOPEDICAL RECONSTRUCTIVE SURGERY
Dror Paley
David Feldman
Felipe Luna González
Ignacio Ginebreda Martí
William Mackenzie
Rosendo Ullot
Moderator: Borja Delgado
14.15-15.30 LUNCH
15.45-17.15 ADVANCES IN CLINICAL RESEARCH
BioMarin
Ascendis Pharma
Therachon
QED Therapeutics
Moderator: Guillermo de la Cueva
17.15-18.15 CHALLENGE IN EDUCATION: ALL EQUAL, ALL DIFFERENT
Paloma González Peña
Carmen Ovies
Yolanda Sánchez
Mercedes Piquer Gascó
Marién Prol Martínez
Alexandra Chas Villar
Modera: Aitor López
18.20-20.20 INTERNATIONAL PATIENT ORGANIZATIONS: BUILDING NETWORKS
Susana Sempere, Spain
Florian Innig, Germany
Marco Sessa, Italy
Diogo Costa, Portugal
Nathalie Meaunier, France
Paul Rodriguez, UK
Maximiliana Stancheva, Bulgaria
Karol Calampa, Perú
Rosa Idalia Aldana, Guatemala
Loly Luciani, Argentina
Rosa Brumberg, Uruguay
Marisela Herrera, Mexico
María Ortega, Colombia
Angela Giuffre, USA
Munaza Altaf, Pakistan
Serguei Fominykh, Russia
Eihaku Itooka, Japan
Kenia María Rio, Brazil
Moderator: Laura Señán Cagiao
21.00 BUS TO DINNER "ESPICHA"
SUNDAY, 14TH OCTOBER 2018
10.30-12.00 THE VISION OF ALPE : FROM A GLOBAL PERSPECTIVE
Carlos León Rodríguez
Carmen Barreal Vega
Belén Ojeda Ruisánchez
Guillermo Ibaseta Díaz
Socorro Martínez Ríos
Begoña Bascarán López
Patricia Aldama Barahona
Laura Garde Etayo
Moderator: Susana Noval Iruretagoyena
12.05-13.05 IMAGE AND MEDIA
Carlota Lafuente
Javier Cancho
Mily R. Cimadevilla
Raúl Gay Navarro
Moderator: Patricia Gil
