Programa 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. 

Viernes, 31 julio 

SCIENTIFIC PROGRAM

07:30-09:00 Sponsored Breakfast Symposium by ORCHARD THERAPEUTICS
09:00-09:30 WELCOME SPEECH
MPS Spain & representative from the Ministry of Health or Local Government
09:30-10:15 OPENING KEYNOTE SPEECH
GENERAL OVERVIEW ON NEWBORN SCREENING FOR MPS
Prof. Dr. Frits Wijburg (Netherlands)
10:15-10:45 COFFEE BREAK
BASICS

10:45-11:15 Topic: The role of autophagy in lysosomal storage diseases
11:15-11:45 Topic: Immunogenicity
11:45-12:15 Topic: CNS Pathology / BBB
12:15-12:30 Q&A Session
12:30-14:00 LUNCH
13:00-14:00
Sponsored Lunch Symposium by BIOMARIN
HOT TOPICS & BREAKING NEWS
14:00-14:20 Topic: Latest animal models for MPS disorders
14:20-14:40 To be determined
14:40-15:00 To be determined
15:00-15:30 Q&A 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
Speakers’ Networking Dinner   Sponsored Dinner Symposium by ABEONA THERAPEUTICS

FAMILY PROGRAM

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

Sábado, 1 agosto

SCIENTIFIC PROGRAM

07:00-08:30 Sponsored Breakfast Symposium by LYSOGENE & SAREPTA THERAPEUTICS
ENZYMATIC THERAPIES

08:30-08:55 Topic: Latest Treatments
08:55-09:20 Topic: Fusion Proteins
09:20-09:45 Topic: Nanoparticles
09:45-10:15 Oral Poster Presentation
The best Abstracts on the topic will be invited to present
10:15-10:35 Q&A Session
10:35-11:00 COFFEE BREAK
REVIEWING PRESENT & FUTURE OF CELLULAR THERAPY

11:00-11:20 Topic: HSCT transplant, bone marrow transplant
11:20-11:40 Topic: Ex vivo therapy MPS II, IIIA, IIIB
11:40-12:00 Topic: Future of ex vivo gene therapy
12:00-12:30 Q&A Session
12:30-13:00 LUNCH
13:00-14:00 Sponsored Lunch Symposium by SANOFI
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

FAMILY PROGRAM

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

Doming, 2 agosto

SCIENTIFIC PROGRAM

07:00-08:30 Sponsored Breakfast Symposium by INVENTIVA PHARMA
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
10:45-12:00 ORAL COMMUNICATIONS

(The Abstract presentation period will be open from January 16 to March 16. The Scientific Committee will select the best to be presented as oral communications. Early May the Scientific Secretariat will communicate the Abstracts selected for oral presentation. Once the author accepts the presentation, its name and title of the presentation will be included in the program.)
12:00-12:30 CLOSING SPEECH: QUALITY OF LIFE – TODAY & TOMORROW
12:30-12:45 PRESENTATION 2022 MPS INTERNATIONAL SYMPOSSIUM
12:45-13:00 THANK YOU & FAREWELL
13:00-15:00 LUNCH

FAMILY PROGRAM

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 CLOSING SPEECH: QUALITY OF LIFE – TODAY & TOMORROW
12:30-12:45 PRESENTATION 2022 MPS INTERNATIONAL SYMPOSSIUM
12:45-13:00 THANK YOU & FAREWELL
13:00-15:00 LUNCH