KEYNOTE SPEAKER

SIVASANGARAN KUMARAN

SIVASANGARAN KUMARAN

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

ALL SPEAKERS

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

DAWN TORRENCE IRELAND

DAWN TORRENCE IRELAND

President of CDHi

STACEY KOENIG, MSM, CCLS

STACEY KOENIG, MSM, CCLS

Senior Director, Patient and Family Support Services

Children's Mercy Hospital

ANNA LAURENT

ANNA LAURENT

Young Adult Representatives of RDLA

EDEN LORD, MSM

EDEN LORD, MSM

Founder & CEO, My City Med

OLIVIA MONTANO

OLIVIA MONTANO

Senior Director

PROS Foundation

NEENA NIZAR, Ed.D.

NEENA NIZAR, Ed.D.

Founder & Executive Director, The Janssen Foundation

CARRIE OSTREA

CARRIE OSTREA

Executive Director and Co-Founder, Little Miss Hannah Foundation

LAURA QUINN

LAURA QUINN

Managing Director, ASSAI Health Solutions

STEVE SILVESTRI

STEVE SILVESTRI

Director of Public Policy

EveryLife Foundation for Rare Diseases

HOLLY SNYDER

HOLLY SNYDER

Board-Certified Genetic Counselor, Illumina

LORNA SPEID, Ph.D., M.R. Pharm. S.

LORNA SPEID, Ph.D., M.R. Pharm. S.

President of the Board of Directors, Putting Rare Disease Patients First!

CAMBRIA LORD

CAMBRIA LORD

Rare Disease Ambassador

The Cambria Lord Foundation

SHARON ROSE NISSLEY

SHARON ROSE NISSLEY

Founder and Executive Director

Klippel-Feil Syndrome Freedom

HELENA BAKER, RGN

HELENA BAKER, RGN

General Registered Nurse