Vice President, Patient Advocacy

Company Overview 

Fulcrum Therapeutics is a clinical-stage biopharmaceutical company focused on improving the lives of patients with genetically defined rare diseases in areas of high unmet medical need. Fulcrum’s two lead programs in clinical development are losmapimod, a small molecule for the treatment of facioscapulohumeral muscular dystrophy (FSHD) and pociredir, a small molecule designed to increase expression of fetal hemoglobin for the treatment of sickle cell disease and other hemoglobinopathies, including beta-thalassemia. The company’s proprietary product engine, FulcrumSeekTM, identifies drug targets that can modulate gene expression to treat the known root cause of gene mis-expression.

Description

Reporting to Chief Medical Officer, the Vice President, Head of Patient Advocacy will oversee both the strategic and operational aspects of Fulcrum’s efforts to integrate the patient experience from discovery to commercialization across Fulcrum’s diverse therapeutic areas.  The VP Head of Patient Advocacy will integrate the patient experience into Fulcrum’s operating model, ensure the patient experience we deliver is best-in class, and focus on authenticity at every phase of the patient journey.

Responsibilities

Working cross-functionally with internal stakeholders including Corporate Communications, Government Affairs, Program Management, Program Leadership, Market Access, Medical Affairs, HEOR and Clinical Operations

• Build strategic roadmap of patient engagement and advocacy from discovery to commercialization that reflects insights and strategies that help elevate Fulcrum with the communities that it serves

• Identify industry best practices that can improve the ability of Fulcrum to support patients

• Generate insights and analytics related to patient and caregiver needs across the patient journey and spearheads the execution of these projects in conjunction with the patient services execution team
• Develop and maintain comprehensive, innovative, value-creating patient engagement strategies, ensuring they maintain strategic prominence with key stakeholders
• Lead a patient facing field team that engages with the community early and often to ensure that Fulcrum is delivering a holistic 360- degree experience for all the communities that it serves.
• Represent Fulcrum at key Patient Advocacy conferences and symposia and at national scientific congresses in order to progress partnerships that support better patient care
• Develop and execute Patient Advisory Boards, Patient Leadership Councils and other forums in support of critical objectives and to gather insights supporting the amplification of the patient voices
• Work closely with the government relations, regulatory and access teams to facilitate engagement of patients’ groups with regulatory authorities, government and health technology assessment groups to ensure that patient perspective is at the center of all decisions
• Ensure that patient facing materials are meaningful and impactful based on patient advisory groups
• Manage the Patient Advocacy budget and supervise the management of any external partners or agency resources

Qualifications

• Bachelor’s degree (Advanced degree preferred)
• Have worked in a pre-commercial rare disease company (preferred)
• 5+ years people management experience with internal FTEs and external field facing team members
• Ability to champion the voice of the patient
• Ability to work in a fast-paced environment, prioritize tasks, and successfully manage multiple projects
• Demonstrated ability to work independently
• Ability to develop and maintain strong working relationships between both cross-functional internal colleagues and external stakeholders