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.
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.
