Associate Director, Patient Advocacy and Engagement

Reporting to the Sr. Director, Global Patient Advocacy Rare and Pipeline, this role drives patient-centric strategies and strengthens relationships with patient advocacy organizations primarily in the US, ensuring alignment with broader Global Rare Medical Affairs and clinical development program strategies.

Responsibilities

• Develop and execute the US patient advocacy strategy for the rare and pipeline portfolio, ensuring alignment with medical and clinical program strategy.
• Partner with internal stakeholders—Medical Affairs, Commercial, Market Access, and Public Affairs—to ensure a unified approach to patient advocacy efforts.
• Develop strategic collaborations between internal and external stakeholders to enhance care for patients.
• Enable patient input and engagement into regulatory and market access submissions.
• Lead the implementation of advocacy programs that are culturally and regionally appropriate, ensuring impact at national and local levels.
• Support a patient-focused culture by collaborating closely with legal, compliance, and data privacy colleagues to ensure adherence to local codes and company policies.
• Serve as the primary point of contact for national, regional, and local patient advocacy groups, fostering trusted relationships that support mutual goals.
• Provide support as needed with international patient advocacy groups.
• Identify and address unmet patient needs by facilitating programs, initiatives, and collaborations that enhance disease awareness, patient education, and access to treatment.
• Develop initiatives to enhance disease awareness, improve time to diagnosis, and educate the patient community to empower active engagement with healthcare providers.
• Represent the organization at patient advocacy events, including conferences, meetings, and community forums, to strengthen external relationships.
• Work closely with Commercial teams to ensure patient-centricity is integrated into brand and market access strategies.
• Partner with Medical Science Liaisons (MSLs) and other field teams to gather insights and facilitate interactions between patient advocacy groups and key stakeholders.
• Collaborate with Public Affairs and Communication teams to align advocacy initiatives with policy and communication strategies.
• Enhance understanding of the patient, caregiver, and associated communities across stakeholders to support strategic decision-making that reflects community needs.
• Lead the development of patient education materials, advocacy resources, and engagement plans in partnership with internal and external stakeholders.
• Monitor and evaluate the impact of patient advocacy initiatives, ensuring continuous improvement and alignment with organizational goals.
• Ensure all patient advocacy activities comply with regulatory, legal, and ethical standards.
• Serve as a trusted advisor on patient advocacy-related matters, providing guidance to internal teams on compliance best practices.

Requirements

• Advanced degree in life sciences, public health, or a related field preferred (PhD, PharmD, MD, or MBA a plus).
• Ability to travel approximately 30% of the time.
• Solid experience in the biotech and pharmaceutical industry.
• 3+ years of experience in patient advocacy, preferably in the biopharmaceutical industry.
• Proven expertise in rare diseases or conditions relevant to primary hyperoxaluria and acute hepatic porphyria is strongly preferred; renal and cardiac experience welcomed.
• Experience leading high-impact patient engagement programs at the national or regional level.

Skills

• Exceptional relationship-building skills with the ability to influence and collaborate across internal and external stakeholders.
• Strong understanding of the patient advocacy landscape, particularly in rare diseases.
• Strategic mindset with the ability to translate complex strategies into actionable plans.
• Proven ability to manage budgets and thrive within compliance frameworks.
• Excellent communication, presentation, and organizational skills.
• Passionate advocate for patients and caregivers, demonstrating empathy and a commitment to improving the patient experience.
• Collaborative team player with a proactive, solutions-oriented mindset.
• Strong business acumen, balancing patient needs with organizational goals.
• Ability to thrive in a fast-paced, matrix environment; prioritize high-impact projects; and execute with purpose.

Pay

Pay ranges between $75–$82 per hour based on experience.