Spreading Wisdom - diagnosed 6+ years

Panel de discusión: El impacto de Duchenne en la familia

Este panel discutirá los portadores genéticos de Duchenne, cómo comunicar el diagnóstico a otros y las experiencias con la planificación familiar.

Gloria Orozco

Presidenta, Coalición Latinoamericana DMD/DMB

Coalición Latinoamericana DMD/BMD

Graciela Méndez

Fundadora

Enlace Distrofia Muscular Duchenne Becker AC​

Sarah G. Seth, MPH, CGC

Consejera Genética Certificada

Hospital de Niños de San Antonio

Pillars of the Transition Journey

This session is intended for families/caregivers of teens and adults with Duchenne. It covers four pillars of the transitional Duchenne journey: Continuity of Care, GI-related Care, Medical Privacy, and School/Career/Hobbies, and is followed by a discussion/Q&A session.

Pradeep P.A. Mammen, MD, FACC, FAHA

Associate Professor of Medicine and Co-Director

Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center, Director for Translational Research for the Advanced Heart Failure and Transplant Cardiology Program, UT Southwestern Medical Center

Hawken Miller

Journalist

Washington Post

Jennifer Shumsky, BSN, RN, CHCO, PACS

Director, Payer Relations

Little Hercules Foundation

Kent Williams, MD

Pediatric Gastroenterologist

Nationwide Children's Hospital

REGENXBIO

RGX-202:  REGENXBIO’s investigational gene therapy for the treatment of Duchenne Muscular Dystrophy presented by:  Johannaz (Naz) Dastgir, DO, Senior Director, Clinical Development Lead at REGENXBIO

A program update on RGX-202, REGENXBIO’s investigational gene therapy program for the treatment of Duchenne.

Contact: Duchenne@regenxbio.com or patientadvocacy@regenxbio.com

Johannaz Dastgir, DO

Senior Director, Clinical Development Lead

REGENXBIO