Senior Director, Patient Affairs Strategy and Operations

Why Sarepta? Why Now?

The promise of genetic medicine has arrived, and Sarepta is at the forefront. We hold a leadership position in Duchenne muscular dystrophy (Duchenne) and are building a robust portfolio of programs across muscle, central nervous system, and cardiac diseases. In 2023, we launched our fourth therapy and the first ever gene therapy to treat Duchenne. 

We’re looking for people who see unlimited potential in themselves and who are motivated by an unwavering commitment to patients.

What Sarepta Offers

At Sarepta, we care deeply about all the people in our community and believe in the importance of supporting them in all aspects of their lives. We aspire to maintain a culture that acknowledges people bring their whole selves to work, and we will strive to help everyone in our community integrate their work and personal lives while maintaining productivity. We are committed to offering a range of benefits and work-life resources designed to support people in the following areas:

• Physical and Emotional Wellness

• ​Financial Wellness

• Support for Caregivers
   

For a full list of our comprehensive benefits, see our website: https://www.sarepta.com/join-us
 

The Importance of the Role

The Senior Director, Patient Affairs Strategy and Operations Excellence lead for Sarepta Therapeutics is a pivotal role dedicated to designing and implementing concrete frameworks to ensure we are able to foster strong relationships with patient communities and advance Sarepta’s patient-centric approach across multiple disease areas, including Duchenne Muscular Dystrophy (DMD), Myotonic Dystrophy (DM1), Ataxias, and other rare genetic diseases in muscle, Central Nervous System (CNS) and Pulmonary. Reporting directly to the Senior Vice President of Patient Affairs, this person will lead the co-creation of governance models, frameworks, and internal process and policy to ensure a strong foundation for patient engagement globally. This role will be responsible for establishing quality measures and metrics and communications strategy for key stakeholders. The Patient Affairs Strategy and Operations Excellence Lead leadership role focused on developing and executing strategies to enhance patient experiences and engagement across the entire organization and across the medicine’s life cycle. This includes understanding patient needs, collaborating with various teams, and overseeing operations related to ongoing external engagement and outreach.

The Opportunity to Make a Difference

• Be a progressive change agent and trusted partner with proven success in creatively solving for business challenges and transforming the way that patients learn about and participate in clinical trials, share their perspectives and how we internalize them.
• Develop and implement a comprehensive global Patient Affairs engagement process and frameworks to ensure patient centricity is driving action.
• Design frameworks to enhance patient-facing activities in support of Clinical Development related to clinical protocol design, execution and enrollment, such as Patient Friction Co-Efficient and other novel frameworks.
• Lead strategy, development, and implementation of patient and caregiver scientific literacy education plan and initiatives
• Oversee the Patient Affairs team budgeting process and reporting, team operating model and governance.
• Identify trends and areas for improvement and report on performance to senior management.
• Partner cross-functionally to identify opportunities to streamline Patient Engagement Operations through standardized processes, innovative technology and/or centralized vendors. Participate in cross-functional internal meetings with clinical, medical affairs, and commercial teams to ensure all plans and activities are informed by the patient voice.
• Create systematic mechanisms such as patient insights forums to obtain patient input, including but not limited to clinical trial design and related to other critical Sarepta activities.
• Strategically manage Patient Affairs team budget including Patient Advocacy Organization sponsorships and charitable donations.
• Stay current with industry and regulatory practices related to patient advocacy and patient input.
• Working with cross-functional colleagues ensure patient experience data are incorporated in our development, regulatory, and commercial activities.
• Provide regular updates to disease communities.
• Ensure all Sarepta employees have regular opportunities to