Director – Patient Advocacy - Inherited Metabolic Disorders

Location: Remote
Reports To: Executive Director, Head of Patient Advocacy

About This Role:

The Director, Patient Advocacy, Inherited Metabolic Disorders (IMD) serves as the strategic leader responsible for shaping and advancing the U.S. patient advocacy strategy for IMD. This role will foster meaningful partnerships across the IMD community, ensuring patient and caregiver perspectives are integrated into company priorities, development programs, and business strategies. The Director will lead high-impact collaborations with advocacy organizations and drive the incorporation of community insights into cross-functional planning and decision-making across the product lifecycle. Through these efforts, the role will help strengthen trust, advance shared goals, and enhance outcomes for the IMD community.

This role will be remotely based.

What You'll Do: 

• Develop and execute the U.S. IMD patient advocacy strategy, ensuring alignment with organizational priorities, business objectives, and the evolving needs of the IMD community.

• Build, cultivate, and maintain trusted relationships with national, regional, and local patient advocacy organizations, community leaders, caregivers, and individuals living with IMD.

• Serve as the primary patient advocacy lead for U.S. IMD, providing strategic guidance and representing the patient perspective across cross-functional teams, including medical affairs, commercial, market access, and regulatory functions.

• Identify, gather, and translate community insights into actionable recommendations that inform decision-making across the product lifecycle.

• Lead the development and execution of patient engagement initiatives that elevate patient and caregiver voices and foster meaningful collaboration with the IMD community.

• Partner with internal stakeholders to ensure patient advocacy strategies are integrated into evidence generation activities, educational initiatives, policy efforts, and commercialization strategies.

• Monitor the external advocacy, healthcare, and policy landscape to identify emerging trends, unmet needs, opportunities, and potential risks impacting the IMD community.

• Support the design and implementation of patient-focused research, advisory boards, community listening initiatives, and other programs that generate meaningful patient insights.

• Ensure all patient advocacy activities are conducted in accordance with applicable legal, regulatory, compliance, and industry guidelines.

• Represent the organization at patient advocacy meetings, scientific congresses, community events, and industry forums to strengthen partnerships and advance shared goals.
  
• Establish and monitor key performance indicators to measure the effectiveness and impact of patient advocacy initiatives and partnerships.

Who You Are:

The right person for this role is a passionate advocate and strategic thinker who understands the unique challenges and opportunities within the rare disease community. They are highly credible with external stakeholders, skilled at fostering trust-based partnerships, and driven by a commitment to improving outcomes for individuals and families impacted by IMD. 

Required Skills:

• Bachelor's degree required; advanced degree in public health, healthcare, life sciences, public policy, communications, or a related field preferred. 

• 8+ years of experience in patient advocacy, patient engagement, public affairs, healthcare, rare disease, or a related field, including experience developing and executing advocacy strategies. 

• Demonstrated ability to build and sustain trusted partnerships with patient advocacy organizations, community leaders, and other external stakeholders. 

• Strong strategic thinking and business acumen, with experience translating patient and caregiver insights into actionable organizational strategies. 

• Excellent communication, presentation, and stakeholder management skills, with the ability to influence across all levels of an organization. 

• Experience leading cross-functional initiatives and working effectively across Medical Affairs, Clinical Development, Commercial, Market Access, and Regulatory teams. 

• Knowledge of healthcare compliance requirements and industry regulations governing interactions with patient advocacy organizations.

Preferred Skills:

• Experience supporting rare disease, genetic disease, lysosomal storage disorder, or MPS-focused programs and communities. 

• Strong understanding of the drug development lifecycle and opportunities for patient engagement from early research through commercialization. 

• Existing relationships within the rare disease and patient advocacy community. 

• Experience designing and implementing patient insight generation activities, including advisory boards, community listening sessions, and patient-focused research. 

• Experience working within a global or matrixed biopharmaceutical organization. 
• Demonstrated success in advancing patient-centered initiatives that influence policy, research, access, or care for rare disease communities.

Additional Information: 

The base compensation range for this role is: $225,000 - $245,000. Base salary offered is determined through an analytical approach utilizing a combination of factors including, but not limited to, relevant skills & experience, job location, and internal equity.