September, Thursday 13th  Auditorium

09:00 h Registration and information collection

10:00 h Opening and welcome

Mrs. Mª José Arregui Galán. Vice-president Fundación Luzón and wife of the founder. Madrid
Ms. Ana María Pastor Julián. Presidenta del Congreso de los Diputados
Dña. Carmen Montón Giménez. Ministra de Sanidad, Consumo y Bienestar Social
Dña. Ángeles Heras Caballero. Secretaria de Estado

10:30 h             Introduction

Ms. Ana Isabel López-Casero Beltrán. Director, Fundación Luzón. Madrid
Ms. Ana González Herrero. R&D&i Director, Fundación Luzón. Madrid

11:00 h    SECTION I: THE ROLE OF NPOs IN ALS CARE AND RESEARCH
                        

11:05 h    ALS Talk: A Global Alliance for fighting against ALS

Mr. Steve Bell. President of the International Alliance of ALS/MND Associations. Shefield. England

11:30 h    Mini-gathering: Best practice in ALS associations

Facilitator: Ms. Patricia García Luna. Vice-president of ELA Andalucía. Sevilla

A respite centre: ALS care residence ‘Middelpunt’
Ms. Evy Reviers.
CEO ALS Liga België. Chairwoman EUPALS. Leuven. Belgium

Integration in the ALS units
Ms. Laura Baget Gutiérrez. Psychologist at EAPS la Caixa / Fundació MIquel Valls and Unit of the Motor Neuron Disease. Hospital Universitario de Bellvitge. Barcelona

Outcomes of the activity in ALS of an NPO
Mr. Steve Bell. President of the International Alliance of ALS/MND Associations. Shefield. England

An NPO for ALS research: ALS TDI
Mr. Rob A. Goldstein. Vice President of ALS Community Engagement & Chief Marketing Officer. ALS Therapy Development Institute

UNELA: Union of ALS Associations in Latin America
Mr. Darío Ryba. President of UNELA (Union of ALS Associations in Latin America). Argentina

Round table

12:35 h  COFFE BREAK – POSTER SESSION

Download poster session

13:05 h  SECTION II: CLINICAL RESEARCH AND CARE, TWO INSEPARABLE PILLARS FOR THE FIGHT AGAINST ALS                         

13:10 h  ALS Talk: The Treatment Research Initiative to Cure ALS: a European project to facilitate trials in ALS

Mr. Leonard Van den Berg. University of Utrecht. President of ENCALS. Member of ALS Dream Team. Utrecht. Netherlands

13:35 h    Mini-gathering: How can more clinical trials be done in Spain?

Facilitator: Dr. Jesús Mora Pardina. Director, ALS Unit. Hospital San Rafael. Madrid

Research as an inseparable part of the best care
Dr. Mónica Povedano Panadés. Coordinator, Motoneuron Functional Unit. Head of the Neurophysiology Unit. Neurology Department. Hospital Universitario de Bellvitge-IDIBELL. Barcelona

A network to foster clinical research in ALS. CIBERNED
Dr. Adolfo López de Munain Arregui. Head of Unit at the Neurology Department. Hospital Universitario Donostia. Biodonostia Health Research Institute, CIBERNED. San Sebastián

Does the Spanish Legislation favor doing clinical trials?
Dr. César Hernández García. Head of the Department of Medicines for Human Use. AEMPS. Madrid

The industry’s perspective
Ms. Amelia Martín Uranga. Responsible for the platform for innovative medicines of farmaindustria. Madrid

Round table

14:40 h  LUNCH BREAK

16:30 h  WORLD CAFÉ: HOW DO WE TAKE CARE OF THE CAREGIVER?

Dr. Mario López de Ávila Muñoz. Founder NODOS. Madrid

19:00 h  DAY CLOSE

Ms. Ana Isabel López-Casero Beltrán. Director, Fundación Luzón. Madrid

 

September, Thursday 13th – Parallel rooms

15:30 h   Meeting of the joint project CIBERER-CIBERNED: RedELA, Red de Investigación en Esclerosis Lateral Amiotrófica. (subject to invitation)