Senior Director, Patient Advocacy & Engagement

Position Overview

The Director, Patient Advocacy & Engagement will design and lead Egetis’ US advocacy strategy for its MCT8 deficiency program. Reporting directly to the Head of Medical Affairs, North America, this individual will partner across the US organization to build Egetis’ patient advocacy and engagement capabilities from the ground up and embed the patient voice into Medical Affairs, Clinical Development, and Commercial planning.

Skills & Competencies

• Strong understanding of the patient and caregiver journey, with experience translating insights into development, launch, access, and lifecycle strategies.

• Deep knowledge of regulatory, compliance, and ethical standards governing interactions with patient organizations, funding, and communications.

• Executive-level communication skills (written and verbal), including the ability to influence senior stakeholders.

• Cross-functional influence and stakeholder management capabilities.

• Strategic thinking with the ability to connect patient engagement initiatives to enterprise objectives.

• Analytical mindset with ability to define metrics, evaluate impact, and derive actionable insights.

Qualifications & Experience

• 8+ years of experience in patient advocacy, patient engagement, Medical Affairs, public affairs, market access, or related functions within biopharma, biotech including rare disease–focused organizations.

• Proven leadership in developing and executing patient advocacy and engagement strategies aligned with medical, clinical, commercial, and corporate objectives.

• Demonstrated ability to build trusted partnerships with patient and caregiver organizations, particularly in rare or specialty disease areas.

• Experience translating patient and caregiver insights into development, launch, access, and lifecycle strategies.

• Cross-functional leadership and influence, including collaboration with Medical Affairs, Clinical Development, Commercial, and Market Access teams.

• Experience serving as a subject-matter expert, advising senior leaders on best practices, regulations, and compliant engagement models.

• Strategic planning and measurement experience, including defining KPIs, assessing impact, and communicating insights to leadership.

• Budget ownership and vendor management experience, including oversight of agencies and consultants.

• Experience representing organizations externally at patient advocacy or rare disease forums.

• Ability to travel up to 30%.

• Willingness and ability to work in a hybrid model, with required on-site presence as defined by business needs.