Associate Director, Patient Advocacy and Engagement

The Associate Director, Patient Advocacy and Engagement, Rare and Pipeline will play a critical role in driving patient-centric strategies and strengthening relationships with patient advocacy organizations primarily in US. Reporting to the Sr. Director, Global Patient Advocacy Rare and Pipeline.

The role will ensure alignment of patient advocacy efforts with the broader Global Rare Medical Affairs and clinical development program strategies. The role will require a dynamic leader with strong interpersonal skills and a deep understanding of rare diseases, patient advocacy, and cross-functional collaboration.

• Develop and execute the US patient advocacy strategy for the rare and pipeline portfolio, ensuring alignment with the medical and clinical program strategy.
• Partner with internal stakeholders, including Medical Affairs, Commercial, Market Access, and Public Affairs teams, to ensure a unified approach to patient advocacy efforts.
• Develop strategic collaborations between internal and external stakeholders in line with mutual goals 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 a positive impact at the national and local levels.
• Support patient-focused culture collaborating closely with legal, compliance, and data privacy colleagues to ensure strict 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 and improve time to diagnosis, as well as educate the patient community so that they are empowered to actively engage with their healthcare provider in the management of their disease.
• 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 the Public Affairs and Communication teams to align advocacy initiatives with policy and communication strategies.
• Enhance understanding of the patient, caregiver, and associated communities across the stakeholders to support strategic decision making that reflects the needs of the community.
• Provides support for other programs as required.

• 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.

• Education:
  
  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 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 would be welcomed.
• Experience leading high-impact patient engagement programs at…