Programa Familiar Preliminar

Por favor tenga en cuenta que este es un Programa Preliminar y por lo tanto los nombre de las sesiones y de los ponentes no ha sido confirmado.
Los horarios de las sesiones también pueden sufrir algún cambio. 

Friday, July 31, 2020

09:00-09:30 WELCOME SPEECH
MPS Spain & representative from the Ministry of Health or Local Government
09:30-10:15 OPENING SPEECH
GENERAL OVERVIEW ON NEWBORN SCREENING FOR MPS
Prof. Dr. Frits Wijburg (Netherlands)
10:15-10:45 COFFEE BREAK
10:45-11:15 KEYNOTE SPEECH ON CLINICAL TRIALS OVERVIEW & EVOLUTION
CLINICAL TRIALS & PATIENT'S INVOLVEMENT PART 1

11:15-11:25 European Reference Network
11:25-12:35 Patient Advocate
12:35-11:45 Adult Patient
11:45-11:55 European Federation of Pharmaceutical Industries and Associations
11:55-12:30 Open Discussion Session
12:30-14:00 LUNCH
CLINICAL TRIALS & PATIENT'S INVOLVEMENT PART 2

14:00-14:10 Drug development
14:10-14:20 Spreading information to the families: past & future
14:20-14:30 Registries
14:30-14:40 Challenges of reimbursement
14:40-14:50 Administration
14:50-15:30 Open Discussion Session
15:30-16:00 COFFEE BREAK
HEART, BONE & GROWTH HORMONE, NEUROSURGERY, PNEUMOLOGY

16:00-16:25 Topic: Heart
16:25-16:50 Topic: Bone & Growth Hormone
16:50-17:15 Topic: Neurosurgical Management of MPS
17:15-17:40 Topic: Pneumology
17:40-18:00 Q&A Session
18:00-19:00 EXHIBITION AREA & POSTER SESSION
19:00-21:00
REMEMBRANCE CEREMONY

Saturday, August 1, 2020

BEST PRACTICES INCLINICAL MANAGEMENT

08:30-09:00 Topic: Clinical management & optimal care
09:00-09:30 Topic: Multidisciplinary team approach
09:30-10:00 Topic: Inter center coordination
THE GLOBAL VOICE OF PATIENTS
10:00-10:10 Marija Joldic, MPS Europe
10:10-10:20 Virginia Tsai, MPS Taiwan
10:20-10:30 Regina Prospero, MPS Brazil
10:30-11:00 COFFEE BREAK
IMPORTANT ISSUES IN TREATMENT

11:00-11:20 Topic: Non-invasive ventilation
11:20-11:40 Topic: Anesthesia/ airways
11:40-12:00 Topic: Orthopedics/technical help
12:00-12:20 Topic: Rehabilitation / physiotherapy
To be determined
12:20-12:40 Topic: Home Therapies/on-the-go treatment
To be determined
12:40-14:00 LUNCH
GENE THERAPIES

14:00-14:25 To be determined
14:25-14:50 To be determined
14:50-15:15 To be determined
15:15-15:40 To be determined
15:40-16:00 Q&A Session
16:00-16:20 COFFEE BREAK
NEW THERAPIES

16:20-16:40 Topic: Odiparcil
16:40-17:00 Topic: Trehalosa
17:00-17:20 Topic: PPS
17:20-17:45 Q&A Session
17:45-19:00 EXHIBITION AREA & POSTER SESSION
21:00-23:00 CONGRESS DINNER

Sunday, August 2, 2020

RELATED DISEASES

08:30-08:55 Topic: Mucolipidosis
08:55-09:20 Topic: New MPS 
09:20-09:45 Topic: Sialidosis
09:45-10:15 Q&A Session
10:15-10:45 COFFEE BREAK
QUALITY OF LIFE - WHAT WE NEED

10:45-10:55 Psychological help and support for patients and family members
10:55-10:05 Social care
10:05-11:15 Burden of disease
11:15-11:25 Seeking independence (adult patient)
11:25-11:35 Patient testimonial
11:35-12:00 Q&A Session
12:00-12:30 QUALITY OF LIFE – TODAY & TOMORROW
Dr. Stewart Rust & patient Jibreel Arshad
12:30-12:45 PRESENTATION 2022 MPS INTERNATIONAL SYMPOSSIUM
12:45-13:00 THANK YOU & FAREWELL
13:00-15:00 LUNCH