Agenda at a Glance

 

Wednesday, August 1 Session Speaker(s) Location
5:00pm – 8:00pm
Registration Maritime Foyer
6:00pm – 9:00pm
International MPS Network Dinner Old Towne- Offsite
Thursday, August 2 Session  Speaker(s)   Location
7:00am – 7:00pm
Registration   Maritime Foyer
7:00am – 8:00am International Network Breakfast   TBD
7:30am – 2:00pm Optional Event($50) San Diego Zoo
(includes breakfast and lunch)
  Offsite
8:00am – 12:00pm
International Network Meeting – Track 1   TBD
12:00pm – 1:00pm
International Network Meeting Lunch   TBD
1:00pm – 3:00pm
International Network Meeting – Track 2   TBD
2:00pm –  3:00pm
Parent Orientation    Executive Center
3:00pm – 7:00pm
Exhibitor Hall Hours   Harbor Island 2 & 3
3:00pm – 3:30pm
Break and Exhibitor Session   Harbor Island 2 & 3
3:30pm – 5:00pm
Opening Plenary and Welcoming Address
Combined sessions: Known and Unknown
Elements of MPS and other LSDs
Coming soon Grande Ballroom A
4:00pm – 5:00pm
Keynote Speakers: Future for MPS Research
and Drug Development (Science/Patient Centric)
Coming soon Grande Ballroom A
5:00pm – 5:30pm
Break and Exhibitor Session   Harbor Island 2 & 3
5:30pm – 7:00pm
Key Insights Into Disease Pathogenesis
Importance for MPS Societies Involvement
Patient Centered Care 
   
5:30pm – 6:00pm
Phenotype/Genotype Correlations – Natural History Studies – Value and Role in Clinical Trials Coming soon Grande Ballroom A
6:00pm – 6:30pm
Panel Discussion: Sequencing, Data Sharing,
Consent, Biobanks, and Patient Registries
-Understanding your Gene value-
Coming soon Grande Ballroom A
6:30pm – 7:00pm
Newborn Screening Updates Coming soon Grande Ballroom A
7:00pm  to 9:00pm
Welcome Reception
  Bayview Lawn
Friday, August 3 Session  Speaker(s)  Location 
 7:00am – 8:00am
Breakfast   Pavilion
7:00am – 6:00pm
Registration   Maritime Foyer
8:00am – 9:30am Opening Session Clinical Management I Presentations Coming soon  Grande Ballroom A
 8:30am – 9:00am  Neurological Manifestations of MPS Coming soon  Grande Ballroom A
9:00am – 9:30am Behavioral Manifestations of MPS Coming soon  Grande Ballroom A
9:00am – 5:00pm
Exhibit Hall Hours   Harbor Island 2 & 3
 9:30am – 10:00am
 Break and Exhibitor Session    Harbor Island 2 & 3
 10:00am – 12:00pm
Clinical Management II Anesthesia, Bone Disease, Cardiac, and Neurologic Conditions    
10:00am – 10:30am
Cardiac Manifestations Across
MPS and Related Diseases
Coming soon Grande Ballroom A
10:30am – 11:00am
Bone Disease and Orthopedic Panel Coming soon Grande Ballroom A
11:00am – 11:30am
Neurologic Variations in MPS Coming soon Grande Ballroom A
11:30am – 12:00pm
Anesthesia Updates Best Practices Coming soon Grande Ballroom A
 12:00pm – 1:00pm
Lunch    Pavilion
 1:00pm – 2:30pm Next Generation Treatments/Combination Therapies and Advancing Clinical Trials    
1:00pm – 1:45pm
Expressions: Gene Therapy 101
and Gene Editing Overview
Coming soon Grande Ballroom A
1:45pm – 2:30pm
Gene Therapy and Clinical Trials:
Gene Delivery Differentials IT/IV/HSCT
Coming soon Grande Ballroom A
 2:30pm – 3:00pm  Break and Exhibitor Session     Harbor Island 2 & 3
3:00pm – 5:00pm
Management- Continued Gene Therapies, Transitioning to Adult
  Outside Harbor Island
3:00pm – 3:30pm Gene Therapy Clinical Trials Expectations/Preparedness
– Patient Perspective- 
Coming soon
 
3:30pm – 5:00pm Alternate Family Conference Track TBD
3:30pm – 4:00pm
Conquering Management of MPS
and Related Diseases As An Adult
   
 4:00pm – 4:30pm
Transitioning Pediatric to Adult Care Coming soon Harbor Island 1
4:30pm – 5:00pm
Living Well and Managing Life Beyond Diagnosis Coming soon Harbor Island 1
 5:30pm – 9:00pm Adult Boat Cruise for those with MPS
and related diseases
  Offsite
Saturday, August 4th  Session  Speaker(s)  Location 
 7:00am – 8:00am Breakfast   Pavilion
7:00am – 5:00pm Registration   Maritime Foyer
 8:00am – 9:30am
Importance of Research and
Advocacy Group Collaboration
Coming soon Grande Ballroom A
 8:00am – 8:45am
Patient Role in Mapping Drug Development Coming soon Grande Ballroom A
8:45am – 9:30am
Ethical Guidelines for Advocacy Groups
and Industry to Collaborate
Coming soon Grande Ballroom A
9:00am – 3:00pm Exhibit Hall Hours   Harbor Island 2 & 3
9:30am – 10:00am  Break and Exhibitor Session   Harbor Island 2 & 3
10:00am – 12:00pm
Management and Research Updates     
10:00am – 10:20am
Research Updates: Pentosan Polysulfate/Genistein Research Coming soon Grande Ballroom A
 10:20am – 10:40am
Genistein Parent Perspective Outcomes Coming soon Grande Ballroom A
 10:40am – 11:20am
Future for HSCT in MPS I Coming soon Grande Ballroom A
11:20am – 11:40am
Managing Pain and Anxiety in MPS
and Related Diseases
Coming soon Grande Ballroom A
11:40am – 12:00pm
Session coming soon    
  12:00pm – 1:00pm
 Lunch   Pavilion
1:00pm – 3:00pm
Charting New Science
in MPS Research Presentations
Grande Ballroom A
1:30pm – 2:00pm Large Animal Model Research/Science and the Eye:
MPS I/MPS IV Implications
Coming soon Grande Ballroom A
2:00pm – 2:30pm
Session coming soon Coming soon Grande Ballroom A
2:30pm – 3:00pm
Session coming soon Coming soon Grande Ballroom A
3:00pm –  4:00pm
Writing our Future for MPS and Related Diseases and Ultimate Advocacy  Grande Ballroom A
3:00pm –  3:45pm
International MPS Awareness Day Global Strategies Coming soon Grande Ballroom A
3:45pm – 4:00pm
2020 International MPS Symposium Presentation Coming soon Grande Ballroom A
4:00pm – 5:00pm
Remembrance Ceremony    Bayview Lawn
6:30pm
Banquet Dinner and Awards   Pavilion