Director / Sr. Director, Global Patient Advocacy

Department: Global Patient Advocacy

Job Description

The Director / Senior Director, Global Patient Advocacy, will work in close collaboration with relevant stakeholders including medical affairs, commercial, regulatory and clinical development to define the company’s patient advocacy priorities and oversee advocacy strategies and collaborations that educate and activate patients.

Direct patient advocacy relationships and interactions across the portfolio disease states including NPC, UCD, Sleep and vEDS and lead advocacy plan execution. Cultivate successful relationships with global patient advocacy organizations and create and execute education and awareness strategies. Serve as an internal subject matter expert on issues relating to patient advocacy.

Job Responsibilities

Ensure deep understanding of supported disease areas and patient needs to inform our work across the organization
Create and execute a strategic and tactical advocacy plan and corresponding budget
Successfully engage rare disease advocates, building trust and long-term relationships
Establish and maintain key relationships with advocacy organizations to drive initiatives for collaboration and education. Share information on company activities and interests with advocacy organizations as appropriate
Collaborate with key internal teams (marketing, regulatory, market access, clinical and business development, medical affairs, corporate communications) on advocacy issues and support their need for patient engagement and insights
Develop and manage the advocacy sponsorship budget and process for patient advocacy grant requests
Attend and represent Zevra at key advocacy meetings
Identify key strategic company representation and advocacy activities at patient conferences and meetings
Build a patient centric culture

Education and Experience:

BS/BA degree in biological sciences, business, marketing or similar field and 10+ years in pharma, biotech industry or patient advocacy
An established history experience in patient engagement, advocacy, and/or relations including experience in developing communications and educational resources OR
Demonstrated experience implementing organizational strategy with advocacy groups and outcomes.
Strong track record of success in program development and execution within timelines and budgets

Knowledge, Skills, and Ability:

Commitment to understanding the needs of patients and their caregivers and demonstrating empathy and respect in these interactions.
Exceptional organizational skills and passionate commitment with demonstrated ability for leading complex initiatives in multiple disease states and programs.
Deep commitment to, and empathy for, patients and their caregivers
Knowledge of patient advocacy community in related disease state areas highly desired
Ability to effectively communicate the priorities and needs of the patient advocacy community.
Demonstrated ability to cultivate and build mutually beneficial working relationships with internal and external stakeholders.

Physical Requirements:

Prolonged periods of sitting at a desk and working on a computer
Must be able to lift up to 10 pounds at a time

Apply at linkedin.com

Zevra Therapeutics is an Equal Opportunity Employer that does not discriminate on the basis of actual or perceived race, creed, color, religion, alienage or national origin, ancestry, citizenship status, age, disability or handicap, sex, marital status, veteran status, sexual orientation, genetic information, arrest record, or any other characteristic protected by applicable federal, state or local laws. Our management team is dedicated to this policy with respect to recruitment, hiring, placement, promotion, transfer, training, compensation, benefits, employee activities and general treatment during employment.