Director of Patient Advocacy – Firdapse

Role Overview

• Develop and implement a comprehensive advocacy strategy that aligns with the organization's mission and objectives
• Identify emerging trends, challenges, and opportunities in the advocacy space to adapt and refine strategies
• Build and maintain relationships with key stakeholders, including patient advocacy groups and community leaders
• Develop strategies to effectively partner with and support patient organizations
• Liaise between Catalyst, patient advocacy organizations, and patient advocates
• Share company activities and interests with patient advocacy groups and key advocacy leaders as appropriate
• Lead the development and execution of advocacy campaigns, initiatives, and programs to support patients, communities, or target populations
• Oversee the creation of resources and tools to empower patients and amplify advocacy efforts
• Coordinate and assist in the development of internal and external advocacy programs
• Monitor and evaluate the impact of advocacy programs to ensure effectiveness and continuous improvement
• Provide strategic guidance and support to team members to ensure the successful execution of advocacy initiatives
• Collaborate with internal teams (e.g., marketing, digital marketing, sales, and medical affairs) to align advocacy efforts with broader organizational goals
• Serve as the voice of the patient both internally and externally by representing the organization at conferences, panels, and media forums; leading partner and vendor engagements; and ensuring patient perspectives are integrated into strategic decision-making
• Develop messaging and communication strategies to amplify advocacy goals and organizational impact
• Represent the company at key patient advocacy group events and community meetings
• Participate in public speaking opportunities including conferences, workshops, panels, videos, and podcasts
• Provide oversight of patient advocacy grant and sponsorship programs, ensuring alignment with organizational strategy, compliance standards, and community impact goals
• Direct annual and multi-year budget planning for patient advocacy initiatives, optimizing resources to maximize reach and sustainability
• Lead financial forecasting and resource allocation in partnership with cross-functional leaders, ensuring fiscal accountability and strategic investment in advocacy priorities
• Additional responsibilities as assigned

Requirements

• Bachelor’s Degree and 7-10 years of relevant patient centric advocacy experience in nonprofit and/or biotech/pharma sectors
• 3-5 years in a leadership or managerial role overseeing advocacy programs, partnerships, or teams
• Exceptional verbal and written communication skills, including editing, and the ability to create effective communications, including educational materials and visual presentations, etc.
• Strong commitment to fostering a patient-focused approach throughout the organization
• Demonstrated passion for advocating on behalf of patient communities and addressing their needs
• Demonstrated ability to cultivate and maintain mutually beneficial relationships with both internal and external stakeholders
• Collaborative team member who is eager to work closely with colleagues
• Strong organizational skills
• Excel in project management, prioritize tasks, organize and manage multiple projects.

Benefits

• health, dental, and vision insurance
• generous paid time off
• retirement savings plan with Company Match