Director, Patient Advocacy, Inherited Metabolic Disorders (IMD)

ITF Therapeutics

1d•$225,000 - $245,000•Remote

About The Position

The Director, Patient Advocacy, Inherited Metabolic Disorders (IMD) is the strategic leader responsible for shaping and advancing the U.S. patient advocacy strategy for IMD. The role develops meaningful partnerships across the IMD community and ensures patient and caregiver perspectives are integrated into company priorities, development programs, and business strategies. It leads collaborations with advocacy organizations and brings community insights into cross-functional planning and decision-making throughout the product lifecycle to strengthen trust, advance shared goals, and enhance outcomes for the IMD community. The position is remotely based.

Requirements

Bachelor's degree required.
At least 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, including the ability to influence across all levels of an organization.
Experience leading cross-functional initiatives and working effectively with Medical Affairs, Clinical Development, Commercial, Market Access, and Regulatory teams.
Knowledge of healthcare compliance requirements and industry regulations governing interactions with patient advocacy organizations.

Nice To Haves

Advanced degree in public health, healthcare, life sciences, public policy, communications, or a related field.
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 advancing patient-centered initiatives that influence policy, research, access, or care for rare disease communities.

Responsibilities

Develop and execute the U.S. IMD patient advocacy strategy, aligning it 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 people living with IMD.
Serve as the primary patient advocacy lead for U.S. IMD and represent the patient perspective across cross-functional teams, including Medical Affairs, Commercial, Market Access, and Regulatory.
Gather and translate community insights into actionable recommendations that inform decisions across the product lifecycle.
Lead patient engagement initiatives that elevate patient and caregiver voices and foster meaningful collaboration with the IMD community.
Partner with internal stakeholders to integrate patient advocacy strategies into evidence generation, educational initiatives, policy efforts, and commercialization strategies.
Monitor the external advocacy, healthcare, and policy landscape for emerging trends, unmet needs, opportunities, and potential risks affecting the IMD community.
Support the design and implementation of patient-focused research, advisory boards, community listening initiatives, and other programs that generate patient insights.
Ensure patient advocacy activities comply with applicable legal, regulatory, compliance, and industry guidelines.
Represent the organization at patient advocacy meetings, scientific congresses, community events, and industry forums.
Establish and monitor key performance indicators to assess the effectiveness and impact of patient advocacy initiatives and partnerships.