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THE RARE FAIR 2019

27 SEPTEMBER 2019, WORLDWIDE

The Rare Fair 2019

Invaluable Patient Resources from Across the Glob

The Rare Fair is your chance to network with rare resources, organizations, patients, and other stakeholders from across the globe.

Event Schedules

27Sep 2019

Welcome Remarks

Speaker: EDEN LORD, MSM
07:00 AMAuditorium

Networking/Exhibit Hall Open

07:15 AMExhibit Hall

Breakout Session 1 & Discussion

08:00 AMAuditorium

Breakout Session 2 & Discussion

09:00 AMAuditorium

Keynote & Discussion

10:00 AMAuditorium

Breakout Session 3 & Discussion

11:00 AMAuditorium

Lunch/Exhibit Hall Open

12:00 PMExhibit Hall

Breakout Session 4 & Discussion

01:30 PMAuditorium

Break/Exhibit Hall Open

03:00 PMExhibit Hall

Breakout Session 5 & Discussion

03:30 PMAuditorium

Dinner/Exhibit Hall Open

05:30 PMExhibit Hall

Concluding Remarks & Next Steps

Speaker: EDEN LORD, MSM
06:30 PMAuditorium
Research & Resources

Patient Registries - Does your Population Need One?

09:00 AM - 9:30 AMAuditorium

New Genetics Course for People Affected by Rare Disease

11:00 AM - 11:30 AMAuditorium

Natural History Studies - The Process Outlined

Speaker: OLIVIA MONTANO
1:30 PM - 2:00 PMAuditorium
27Medical Professionals & Researchers

Nursing in the Rare Disease Environment

9:30 AM - 10:00 PMAuditorium

From the Lab to the Patient

2:00 PM - 2:30 PMAuditorium

Child Life: Strength Among the Unknown

11:00 AM - 11:30 AMAuditorium

A Community Pharmacist's Role in the Management of Rare Diseases"

2:30 PM ETAuditorium

Who's Speaking?

SIVASANGARAN KUMARAN

SIVASANGARAN KUMARAN

Rare Disease Advocate (Father of Swathi – Infantile Pompe Warrior)

BECKY M. ABBOTT, MPH

BECKY M. ABBOTT, MPH

National Foundation for Ectodermal Dysplasias

ALISON BATEMAN-HOUSE, PhD, MPH, MA

ALISON BATEMAN-HOUSE, PhD, MPH, MA

NYU Langone Health Department of Population Health

TARA BRITT

TARA BRITT

Associate Chair, NC Rare Disease Advisory Council Founder, NC Rare Disease Innovations Institute

STACEY FEUER, PSYD, MLD

STACEY FEUER, PSYD, MLD

Patient Advocate, Speaker & Health Psychologist

STEPHANIE FISCHER

STEPHANIE FISCHER

Rare Disease Patient & Advocate

DR. FEMIDA GWADRY-SRIDHAR

DR. FEMIDA GWADRY-SRIDHAR

Founder and CEO

PULSE infoframe

BARBARA L. HANDELIN, PhD

BARBARA L. HANDELIN, PhD

Founder, CEO Audacity Therapeutics, PBC

Buy Tickets

$29/day
Patient/Advocate
  • Entrance
  • Coffee Break
  • Certificate
  • Workshop
$189/day
Premium
  • Entrance
  • Coffee Break
  • Certificate
  • Workshop

Join The Rare Fair 2019

The Rare Fair is the only 100% virtual, 100% global event for the rare disease community.
Join us on 9.27.19 from 7A-7P ET. We saved you a seat.
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