Han Phan, MD

Title: Director

Organization: Rare Disease Research, LLC

Bio: Dr. Han Phan is a pediatric neurologist and sleep specialist who is highly passionate about clinical trials in neuromuscular diseases, specifically Duchenne Muscular Dystrophy and Spinal Muscular Atrophy. She is a member of the Pediatric Advisory Board at the FDA and a guest researcher at the CDC Newborn Screening Branch. She is currently an Associate Professor at the University of Alabama, and codirector of MDA clinic. At Rare Disease Research center, she is the principal investigator overseeing ongoing studies in neuromuscular patients.

2024 FUTURES Preparing for the Unexpected, Responding to Emergencies

A Duchenne emergency case study, the steps to take, and the signs to watch for. From implementing an emergency plan and following it to effective communication with the Emergency Room to get the care you need. A review of the cautions and a proactive plan of care from specialists.

Mindy Cameron

Patient Advocacy Lead

Santhera Pharmaceuticals

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Han Phan, MD

Director

Rare Disease Research, LLC

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Jennifer Wallace Valdes, PT

CureDuchenne Certified Physical Therapist

CureDuchenne Physical Therapy Program

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

Beyond Dystrophin Panel

This conference session provides insight and updates from companies whose therapies target critical aspects of the Duchenne disease process that occur alongside reductions in dystrophin.

Abby Bronson

Vice President, Patient Advocacy & External Innovation

Edgewise Therapeutics

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Mindy Cameron

Patient Advocacy Lead

Santhera Pharmaceuticals

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Matthew Klein, M.D., M.S., FACS

Chief Operating Officer

PTC Therapeutics

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Daniel Paulson, MD

Vice President of Clinical Development

Capricor Therapeutics

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Han Phan, MD

Director

Rare Disease Research, LLC

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

Más allá de la distrofina

Esta sesión de la conferencia brinda información sobre las terapias emergentes más allá de la restauración de la distrofina, así como actualizaciones/anuncios de las empresas en este espacio.

Han Phan, MD

Director

Rare Disease Research, LLC

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Mindy Cameron

Patient Advocacy Lead

Santhera Pharmaceuticals

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Matthew Klein, M.D., M.S., FACS

Chief Operating Officer

PTC Therapeutics

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Abby Bronson

Vice President, Patient Advocacy & External Innovation

Edgewise Therapeutics

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Daniel Paulson, MD

Vice President of Clinical Development

Capricor Therapeutics

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Video
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Spreading Wisdom - diagnosed 6+ yearsGrowth and Transformation - diagnosed 3-6 years