Preliminary Family Program

Please note this is a Preliminary Program therefore the speaker and title of their sessions are still pending confirmation.
The timings of the lectures or sessions might also be subject to changes.

Friday, July 31, 2020

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 End points & patient involvement
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
12:20-12:40 Topic: Home Therapies/on-the-go treatment
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 VPS33A
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