Director, Patient Affairs

Why Sarepta? Why Now?
The promise of genetic medicine has arrived, and Sarepta is at the forefront. We hold leadership positions in Duchenne muscular dystrophy (DMD) and limb-girdle muscular dystrophies (LGMDs), and we currently have more than 40 programs in various stages of development in gene therapy, RNA and gene editing. 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 Director, Patient Affairs creates and maintains strong relationships with global rare disease communities and patient advocacy organizations in the neuromuscular space to enhance the individualized approach to patient care that defines Sarepta’s commitment to our patient communities. This position reports to the Senior Director, Patient Affairs to lead our collaborations with patient advocacy groups worldwide in various rare disease communities, represent the patient perspective as an active participant of cross-functional working teams, and develop innovative solutions and programs to meet the dynamic needs of the patient communities.

The Opportunity to Make a Difference

• Providing insight into the pulse of disease communities and ensuring strong collaborations with patient advocacy groups worldwide, especially in the neuromuscular community

• Engaging the Advocacy Community for feedback regarding critical decisions that will impact the community
• Building relationships and collaborating with existing and/or evolving patient associations.
• Championing community insights, concerns and perspectives inside and outside Sarepta
• Successfully working with external patient organizations to help them grow and develop into high-functioning, sustainable organizations
• Staying current with relevant information and resources regarding industry and health care legislation, RNA and Gene therapy therapeutic development, and comprehensive disease state awareness
• Providing updates regularly to disease communities, especially as related to clinical trial and pipeline evolution. Develop presentations for patient conferences and workshops
• Driving optimized patient engagement and contributing to the development of patient experience data
• Oversee development and management of community-facing educational presentations and newsletter materials, building strategy to suit the changing landscape of in-person community engagement
• Ensures that all employees at Sarepta have an opportunity to learn about the patient perspective and Sarepta's commitment to the communities we serve
• Works compliantly in interactions with patient advocates, patients, families and caregivers per internal and external guidelines 
• Responsible for project management and execution of patient affairs initiatives
• Completes administrative duties in a timely fashion

Other related duties as required

More about You

• Previous global work with Advocacy organizations, and communities in the rare disease field strongly preferred
• 10+ years of patient advocacy experience, progressive experience in a healthcare / biopharma setting
• Bachelor’s degree in science, social science or related field. Advanced degree in health sciences preferred
• Bilingual- English/Spanish preferred
• Strong project planning and management skills, including problem-solving and risk mitigation.
• Self-directed learner with an understanding of drug development and clinical program development. Knowledge of various global healthcare systems and key policies relevant for pharmaceutical market access for highly innovative medicin