Senior Director, Patient Advocacy & Engagement

Join us in helping patients with rare diseases. At Egetis Therapeutics we challenge the status quo for the benefit of those in need. We offer an open, positive and supportive culture where everyone can be their best. Through trust, we work seamlessly across functions. As an employee you are empowered and encouraged to have an entrepreneurial spirit, enjoying an organization with conscious and efficient decision-making and we take pride in our collaborative working environment!

In February 2025, the European Commission approved Egetis’ Emcitate® (tiratricol) as the first and only treatment of peripheral thyrotoxicosis in patients with monocarboxylate transporter 8 (MCT8) deficiency (Allan-Herndon-Dudley Syndrome). In January 2026, Egetis completed the U.S. rolling NDA submission to the FDA for Emcitate® (tiratricol) for treatment of patients with MCT8 deficiency.

As a committed, courageous and collaborative organization, we are seeking to grow our team to drive success both in the pre-launch and post launch phases of our anticipated U.S. approval.

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Our Values

Courageous- Challenge the status quo for the benefit of the patient

Committed- Operate with high ethical standards through efficient organization to deliver top quality results.

Collaborative- Through trust, work seamlessly across functions and with external partners.

Position Overview

The Senior Director, Patient Advocacy & Engagement will design and lead Egetis’ US advocacy strategy for its MCT8 deficiency program. Reporting directly to the President, North America, this individual will work closely with Medical Affairs, Commercial, Market Access, Clinical Development, Patient Services, and Corporate Affairs to ensure patient and caregiver perspectives are meaningfully incorporated into company activities and decision-making.

The ideal candidate brings significant biopharma advocacy experience, deep expertise in rare disease, and a demonstrated ability to build trusted relationships with patients, caregivers and advocacy organizations and key stakeholders across the healthcare ecosystem. This individual will lead initiatives to increase disease awareness, understand unmet needs in the MCT8 deficiency community, and help ensure patient perspectives inform evidence generation, educational initiatives, patient support programs and access planning.

This is a highly collaborative, hands-on role within a small, mission-driven organization preparing for its first US commercial launch. The Senior Director, Patient Advocacy & Engagement will serve as a primary patient advocacy lead in North America, working across functions to advance patient centered initiatives that support both the community and the successful launch of Egetis’ firs rare disease therapy.

• 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.

Strategic Planning and Cross Functional Collaboration

• Develop and execute the US Patient Advocacy & Engagement strategy for the MCT8 deficiency program in alignment with organizational priorities.
• Serve as the primary relationship lead for MCT8 deficiency and broader rare disease advocacy organizations in North America, building trusted and sustainable partnerships.
• Partner with Medical Affairs, Commercial, Market Access, Patient Services, and Clinical Development teams to ensure patient and caregiver insights inform planning and decision-making.
• Identify opportunities to address unmet needs within the patient and caregiver community through compliant and patient-focused initiatives.
• Provide guidance to internal stakeholders regarding advocacy best practices, patient engagement approaches, and compliant external collaborations.
• Contribute to the continued development of patient engagement capabilities and processes that support Egetis' long-term growth.

Patient & Caregiver Engagement Execution

• Manage patient advocacy collaborations, sponsorships, and funding activities in accordance with company policies and applicable compliance requirements.
• Partner with Legal, Compliance, Medical Affairs, and Commercial colleagues to ensure advocacy activities are conducted ethically and in accordance with industry standards.
• Monitor developments within the rare disease advocacy and policy landscape and communicate relevant insights to internal stakeholders.
• Maintain appropriate documentation and tracking of advocacy activities, engagements, sponsorships, and outcomes.
• Represent Egetis at patient advocacy, rare disease, and professional meetings to foster relationships, gather insights, and support disease awareness efforts.

Advocacy Operations and Compliance

• Manage patient organization funding and collaboration activities in accordance with established company policies, compliance requirements, and operational processes.
• Monitor developments affecting the rare disease advocacy landscape and share relevant insights with internal stakeholders to support informed planning and engagement activities.

Measurement, Budget & Operational Management

• Develop and track key metrics for advocacy and engagement activities and communicate results, learnings, and recommendations to internal stakeholders.
• Manage the patient advocacy budget and external partners to support effective and efficient execution of approved initiatives.

Qualifications & Experience

• 8-12years 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 experience developing and executing patient advocacy and engagement initiatives in support of medical, clinical, commercial, or patient-focused 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 providing guidance to cross-functional teams regarding patient engagement best practices and compliant collaboration 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.