Director Patient Advocacy and Engagement, US

Egetis Therapeutics AB

19d•Hybrid

About The Position

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 The ideal candidate brings substantial biopharma advocacy experience, deep expertise in rare disease, and a track record of building trusted, highintegrity relationships with patients, caregivers, and advocacy organizations. They will drive initiatives to increase disease awareness, address unmet needs in the MCT8 deficiency community, and ensure that patient perspectives shape evidence generation, access strategy, and educational efforts. This is a highly collaborative, handson role in a small, nimble, and missiondriven team that demands excellent communication, strategic thinking, and crossfunctional partnership. As a key member of the US Medical Affairs organization, the Director, Patient Advocacy & Engagement will play a pivotal role in shaping Egetis’ patientcentric culture and contributing broadly to the success of the first US launch and future rare disease programs.

Requirements

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.
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 abilityto define metrics, evaluate impact, and derive actionable insights.

Responsibilities

Serve as the senior liaison between Egetis and MCT8deficiency–specific and rare-disease patient organizations, building trusted, long-term relationships that reflect Egetis’ patient-first commitment.
Develop and execute a strategic Patient Advocacy and Engagement plan aligned with corporate and functional objectives, delivering innovative, high-impact value to the MCT8 deficiency community.
Champion and govern integration of patient and caregiver perspectives across US Medical Affairs and cross-functional teams to inform priorities, strategy, and decision-making.
Partner with Commercial and Market Access leadership to ensure patient insights inform launch planning, value narratives, services, evidence generation, and access strategies.
Serve as the internal subject-matter expert on patient advocacy and engagement, advising leaders on best practices, regulations, and ethical, compliant partnership models.
Build scalable patient-engagement frameworks to support future pipeline programs and assume responsibility for Patient Advocacy and Engagement as the pipeline expands.
Lead patient and caregiver engagement initiatives (e.g., caregiver panels, advisory meetings, educational events) to integrate diagnostic and disease-journey insights into organizational understanding of unmet needs.
Oversee development and delivery of clear, balanced, and compliant patient-facing materials addressing disease education, clinical trial participation, approval/launch, and access to treatment.
Represent Egetis externally at key patient advocacy, rare-disease, and professional forums to elevate the patient voice and strengthen the ecosystem.
Provide strategic oversight of patient-organization funding and collaborations; establish compliant policies, processes, and tracking systems for funding and sponsorship requests and outcomes.
Monitor relevant policy, access, and standards-of-care developments in rare disease and guide appropriate, compliant engagement to support evolution of the ecosystem.
Define success metrics and KPIs for advocacy and engagement, track impact, and communicate insights and recommendations to senior leadership.
Own and manage the patient advocacy budget and external partners (e.g., consultants, agencies) to ensure efficient resource use and high-value execution.