Role Summary
Primary point of contact for families during the treatment discovery phase for Elevidys, providing clear, compassionate education to support informed discussions with the care team. This field-based role supports patients and caregivers considering or undergoing Duchenne therapy, serving as a trusted educational resource and bridge between the patient community and Sarepta. The role requires collaboration with internal teams to meet local territory needs and includes hybrid work with on-site duties in the United States and travel as needed.
Responsibilities
- Provide education and ongoing support to patients, caregivers, and the DMD community including Elevidys product information, dosing and administration, and other needed education
- Connect patients and caregivers to relevant support programs, advocacy and community organizations
- Help families navigate available options and understand next steps in their pre-treatment journey
- Be accessible to address the questions of caregivers and patients
- Create awareness and educate through local advocacy and programming, including coordinating patient programs and education at conferences
- Respond promptly to patient and caregiver questions and concerns, providing resources to resolve issues, while ensuring compliance with HIPAA and patient privacy policies
- Relay insights from the patient and caregiver community to internal stakeholders to help improve education and support programs
Qualifications
- Required: Bachelorβs degree plus 10 years of experience in healthcare, life sciences, social work, public health, or a related field
- Required: 3+ years of field-based experience in patient advocacy, patient support, healthcare education, or a related role
- Required: Experience directly supporting patients
- Required: Ability to speak empathetically and connect with patients and families facing challenging medical diagnoses
- Required: Strong communication skills including public speaking and presentation experience
- Required: Ability to explain complex information clearly and compassionately
- Required: Demonstrated ability to effectively collaborate with case managers and account managers, handle difficult patient cases, and respond promptly to patients
- Preferred: Experience in neuromuscular diseases, rare diseases or gene therapy
- Preferred: Bi-lingual English/Spanish
- Preferred: Experience working with patient advocacy organizations
Additional Requirements
- Overnight travel may be required; significant driving of a vehicle and prolonged periods of sitting; travel expected to be approximately 20β50%, including some overnights and weekends