September, Friday 14th   Auditorium

09:40 h Day introduction

Ms. Ana Isabel López-Casero Beltrán. Director, Fundación Luzón. Madrid
Ms. May Escobar Lago. Director, Public Affairs, Fundación Luzón. Madrid

 

09:45 h Mini-gathering: The media, how can they contribute to the visibility and reporting of ALS?

Facilitator: Mr. Arturo San Román Ferreiro. General Director of Content. Grupo Gestiona. Madrid
D. Emilio de Benito Cañizares. Health and Science Editor. Diario EL PAIS. Madrid
D.ª Cristina López Schlichting. Program Fin de Semana. Cadena COPE. Madrid
Mr. Fernando Jáuregui Campuzano. Journalist. President of Educa2020. Madrid


10:15 h SECTION III: HOW TO ACHIEVE EFFECTIVE COORDINATION BETWEEN HEALTH CARE AND SOCIAL CARE?

10:20 h ALS Talk: The approach to care. A whole challenge for our system

Dr. Rafael Bengoa Rentería. Co-Director at SI-Health and Senior Fellow of the Harvard University. Bilbao

10:45 h Mini-gathering: Ongoing experiences for an effective integration of care in ALS

Facilitator: Ms. María Bestué Cardiel. Spokesperson for Healthcare Strategies. General Directorate for Healthcare. Government of Aragón

Socio-sanitary route of ALS in the Community of Madrid

Ms. Ana Dávila-Ponce de León Municio. Directora General de Humanización. Consejería de Sanidad. Comunidad de Madrid. Madrid

Protocol for the coordination of Healthcare-Social Services. Medical social history in Andalusia

Mr. Gonzalo Rivas Rubiales. Dirección General de Personas con Discapacidad. Consejería de Igualdad y Políticas Sociales. Junta de Andalucía

Center for the integral care of neurodegenerative diseases of Aragon: care innovation

Consejería de Sanidad de Aragón

Plan for the integral provision of care in Galicia

D. Jesús Vázquez Almuiña. Conselleiro de Sanidade. Xunta de Galicia

Round table

11:55 h COFFEE BREAK – POSTER SESSION

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12:25 h SECTION IV: BEST CLINICAL PRACTICE IN HEALTH CARE

12:30 h ALS Talk: The Beaumont MND Clinic

Pr. Orla Hardiman. Beaumont MND Clinic. Dublin. Ireland

12:55 h Mini-gathering: Good care practice in ALS

Facilitator: Dr. Emilia Barrot Cortés. Head of the Pulmonology Department. CMU of Respiratory Diseases. Hospital Universitario Virgen del Rocío. Sevilla

Case management, an essential piece
Ms. Yolanda Morán Benito.
Case nurse at the ALS Unit. Hospital Carlos III-La Paz. Madrid

Good practice in nutrition
Ms. Oihana Monasterio Jiménez.
Dietist-Nutricionist. Nutrition Unit. ALS Unit. Hospital Universitario Basurto. Bilbao

Cognitive assessment of patients with ALS
Dr. Jordi Gascón Bayarri.
Neurologist. Neurology. Department. Hospital Universitario de Bellvitge. Barcelona

Good practice in respiratory care in ALS
Dr. Emilio Servera Pieras.
Head of the Pulmonology Department. Hospital Clínico Universitario. Valencia

Round table

14:00 h LUNCH BREAK

15:30 h SECTION V: THE TECHNOLOGY OF THE FUTURE FOR ALS

15:35 h ALS Talk: Technology, an ally for health

Mr. Carlos García Espada. Director Partner at Everis Telecom

16:00 h Mini-gathering: Technology for ALS

Facilitator: Ms. May Escobar Lago. Director, Public Affairs. Fundación Luzón. Madrid

Innovating in the field of health. Mowoot an example set by biodesign process
Mr. Markus Wilhelms. Director, Mowoot. Barcelona

Mouse4all: the importance of staying connected

Mr. Javier Montaner Gutiérrez. Co-Founder of Mouse4all. Madrid

Epyro: innovation for ALS from the San Cristobal School

Mr. Carlos Benedito Tabares. Highschool student. Member of ETSC (Electronic Team San Cristóbal). Colegio San Cristóbal. Castellón
Mr. Julio Boixader Gil. Colegio San Cristóbal. Castellón

Present and future challenges of alternative and augmentative communication

Mr. Eduardo Jaúregui Torrecilla. Co-Founder and CEO. IRISBOND. San Sebastián

Round table

17:00 h ROUND TABLE OF THE ALS COMMUNITY: FUTURE CHALLENGES

Facilitator: Ms. Ana Isabel López-Casero Beltrán. General Director, Fundación Luzón. Madrid
Ms. May Escobar Lago. Director, Public Affairs. Fundación Luzón. Madrid
Dr. Jesús Mora Pardina. Director, ALS Unit. Hospital San Rafael. Madrid
Dr. María Bestué Cardiel. Spokesperson for Healthcare Strategies. Dirección General de Asistencia Sanitaria. Gobierno de Aragón
Dr. Emilia Barrot Cortés. Head of the Pulmonology Department. Hospital Universitario Virgen del Rocío. Sevilla
Dr. Mario López de Ávila Muñoz. Founder NODOS. Madrid
Dr. David Rudilla García. Psychologist. Hospital Universitario La Princesa-Air Liquide Healthcare. Madrid


17:45 h FUNDACIÓN LUZÓN AWARDS

Given by: Ms. M.ª José Arregui Galán. Vice-president Fundación Luzón and wife of the founder. Madrid


18:30 h ALS IN THE CENTURY OF EMOTIONS, WOMEN AND NEUROSCIENCE

Dr. Jordi Montero Homs. Neurophysiologist. Institut Dexeus. Barcelona


18: 50 h CONGRESS CLOSE AND FAREWELL

Mrs. M.ª José Arregui Galán. Vice-president Fundación Luzón and wife of the founder. Madrid

CLAUSURA

Mrs. Manuela Carmena Castrillo. Mayor of Madrid

September, Friday 14th Parallel rooms

 
11:00 h. RESEARCH GROUPS AND CARE DEVICES

Conducted by:
Dr. Rosario Osta Pinzolas. LAGENBIO.
School of Veterinary. Universidad de Zaragoza. Institute of Healthcare Research of Aragón. Zaragoza

Dr. Alberto García Redondo. Director of ALS Research Laboratory. ALS Unit. Health research institut. Hospital Universitario Doce de Octubre “i+12”. CIBERER U-723. Itto. Univ. Neurochemistry research. BqBM Department. UCM. Hospital Universitario Doce de Octubre. Madrid

11:00-12:00 h Presentation of best practice in healthcare organization

12:00-13:00 h Presentation of research groups

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