SUMMIT WED OVERVIEW 18 - Global Genes · 12:00p – 6:00p Registration Sponsored by: 3:00p –...
Transcript of SUMMIT WED OVERVIEW 18 - Global Genes · 12:00p – 6:00p Registration Sponsored by: 3:00p –...
9:00a – 4:00p RARE Entrepreneur Bootcamp (Application Required)
11:30a – 3:30p RARE Global Advocacy Leadership Symposium (Invitation Only)
12:30p – 4:30p Corporate Alliance Meeting (Invitation Only)
4:00p
Welcome Reception
12:00p – 4:00p Rady Children’s Institute for Genomic Medicine’s Genomics 101 Workshop
12:00p – 6:00p Registration Sponsored by:
3:00p – 6:00p
Freshman Orientation
6:00p – 8:00p
Exhibit Pavilion Open Sponsored by:
Sponsored by:
SUMMITOVERVIEW
SEPTEMBER 18, 2019 - PRE-SUMMIT
WED18
SUMMITOVERVIEW
THUR19
DayOne
1:00p–
2:00p
10:30a–
11:30a
3:00p–
4:00p
TRACK 1
Eating Well: Taking Care of Yourself
through Nutrition
Getting Financial Help: Qualifying for Disability and Other Insurance Matters
Romance While Rare
We Are Here: Finding Others and Building
Your Community
Your Diagnosis Matters: What are ICD
and ORPHA Codes and Why are They
Important
Developing Partnerships Among Rare Communities
and Individuals
Early Drug Development: What
Patients Bring
Rare Disease Research: Getting
Your Disease Noticed
General Data Protection Regulation:
Implications for You and Drug Development
Caring for Yourself and Others While
Rare
Building and Activating Your
Community
Patients as Drivers in Drug Development
What’s Now: Innovations inRare Disease
Technologies for Learning about Rare
Disease from Patients and Caregivers
Genome Sequencing: Hope, Promises and
Limitations
What is Druggable?New Therapeutic Targets in Rare
Disease
TRACK 2 TRACK 3 TRACK 4
7:00a – 7:30a Yoga Sponsored by:
7:30a – 4:00p Registration Sponsored by:
7:30a – 8:15a Breakfast Sponsored by:
8:15a – 9:30a Welcome and Keynote with Susannah Cahalan
9:30a – 10:30a Networking/Appointment Break Sponsored by:
9:30a – 10:30a Poster Presentations Sponsored by:
9:30a – 7:30p Exhibit Pavilion Open Sponsored by:
Lunch Sponsored by:
Networking/Appointment Break Sponsored by:
Closing Session: Challenging Your Limits
Day One Reception
4:15p – 5:15p
5:15p – 7:30p Sponsored by:
Poster Presentations Sponsored by:
11:30a–
1:00p
2:00p–
3:00p
2:00p–
3:00p
SEPTEMBER 19, 2019 - DAY ONE
DayTwo
1:00p–
2:00p
10:30a–
11:30a
2:45p–
3:45p
TRACK 1
Family Planning: Decisions and
Considerations
Crafting a Career:
Professional Life with a Rare Disease
Finding Answers: The Importance of
Communicating with Clinicians
We Are Here: Finding Others and Building
Your Community
Leveraging Digital Tools for Reach and
Impact
The New Normal: Patient Communities
Drive Innovation
Patients and Caregivers: Shaping
Clinical Drug Development
Patients and Advocates as
Entrepreneurs: New Models for Drug
Development
The Value of Rare Disease Therapies:
Patient Perspectives Needed
Owning Your Future with aRare Disease
Becoming aStronger Advocate
The Drug Development
Future: Science, Policy, Partnerships
and Economics
What’s Next: Innovations in Rare
Disease
Breakthroughs for Rare Neurological
Syndromes
The Future of Rare Metabolic
Syndromes
Advances in Rare Immunological
Diseases
TRACK 2 TRACK 3 TRACK 4
7:00a – 7:30a Yoga Sponsored by:
7:30a – 12:00p Registration Sponsored by:
7:30a – 8:15a Breakfast Sponsored by:
8:15a – 9:30a Chasing Cures: The Power of Patients
9:30a – 10:30a Networking/Appointment Break Sponsored by:
9:30a – 10:30a Poster Presentations Sponsored by:
9:30a – 4:20p Exhibit Pavilion Open Sponsored by:
SUMMITOVERVIEW
Lunch Sponsored by:
Networking/Appointment Break Sponsored by:
Break
Next: Imagining the Future of Rare Disease
RARE Champion of Hope Celebration Reception
RARE Champion of Hope Celebration
3:45p – 4:00p
4:00p – 5:00p
6:30p – 7:30p
7:30p – 10:00p
Poster Presentations Sponsored by:
Sponsored by:
11:30a–
1:00p
2:00p–
2:45p
2:00p–
2:45p
SEPTEMBER 20, 2019 - DAY TWO
FRI20
SUMMITNETWORKING
Want to network with people who are interested in similar topics? Join one of our many guided networing sessions. Each session has a theme and expert facilitators to help you connect with other attendees around common interest areas.
Topic: Adult Rare Disease StakeholdersDate: Thursday, September 19Time: 9:30 – 10:30 a.m. Location: Nautilus Ballroom 4, Bottom FloorFacilitator: Andra Stratton, President & Co-founder, Lipodystrophy United
Topic: Moms and Dads of Rare Disease PatientsDate: Thursday, September 19Time: 9:30 – 10:30 a.m.Location: Nautilus Ballroom 5, Bottom Floor Facilitator: Jennifer Seidman, Courageous Parents Network
Topic: StorytellingDate: Thursday, September 19Time: 2:00 – 3:00 p.m. Location: Nautilus Ballroom 5, Bottom FloorFacilitators: Travis Flores, Speaker and Author,Madison McLaughlin, Actress
Topic: Genetic Testing 101Date: Friday, September 20Time: 9:30 – 10:30 a.m. Location: Nautilus Ballroom 4, Bottom FloorFacilitators: Jessica Shiles, Genetic Counselor, Fulgent Genetics,Laura Drzich, Curation QA Associate, Fulgent Genetics
Topic: Working with ResearchersDate: Friday, September 20Time: 9:30 – 10:30 a.m.Location: Nautilus Ballroom 5, Bottom Floor Facilitator: Sandra Bedrosian-Sermone, President and Executive Director,ADNP Kids Research Foundation
Topic: TravelDate: Friday, September 20Time: 2:00 – 2:45 p.m.Location: Nautilus Ballroom 5, Bottom Floor Facilitator: Kevan Chandler, Founder, We Carry Kevan