Director, Patient Advocacy

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 of Patient Advocacy at Sarepta Therapeutics is a pivotal role dedicated to fostering strong relationships with patient communities and advancing Sarepta’s patient-centric approach across multiple disease areas. Reporting directly to the Senior Director, Patient Affairs, the Director, Patient Advocacy will lead strategic collaborations with patient advocacy organizations and patient community engagement globally. This role integrates the perspectives of patients and caregivers into the strategic and operational framework of the organization, spanning research and development to commercial activities, and develops innovative solutions to meet the needs of the patient community.

The Opportunity to Make a Difference

• Develop and implement a comprehensive global patient affairs strategy.
• Establish and maintain strong, trustworthy relationships with patient advocacy leaders across various disease areas of responsibility.
• Develop patient advocacy landscapes for new disease areas and identify engagement opportunities across Sarepta, including medical affairs, clinical, policy/government affairs, and commercial.
• Represent Sarepta at patient advocacy organization meetings both in the US and internationally.
• Manage external presentations to professional organizations and non-profit partners in the Rare Diseases community.
• Participate in cross-functional meetings with clinical, medical affairs, and commercial teams to ensure all plans and activities are informed by the patient voice.
• Identify educational needs of patient communities, particularly regarding novel therapeutic modalities, including gene therapy, and develop and facilitate cross-functional strategies to address these needs.
• Strategically manage and budget 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 through appropriate educational and information mechanisms.
• Ensure compliant interactions with patient advocates, patients, families, and caregivers, and monitor evolving global guidelines.
• Develop and implement caregiver and sibling strategies to support the needs of patients' families and caregivers and minimize burdens associated with treatment.
• Perform other related duties as assigned.

More about You

• Bachelor’s degree in psychology, counseling, social work, or a related field; advanced degree preferred.
• Demonstrated patient centric mindset.
• Minimum of 12+ years of patient advocacy experience in the healthcare/biopharma setting. Rare disease experience preferred.
• Solid understanding of compliance requirements for patient advocacy industry roles and familiarity with the drug development process.
• Excellent interpersonal, oral, and written communication skills, including strong presentation skills; confident in presenting to senior leadership.
• Ability to build rapport quick