Senior Director, Patient Advocacy - Boston Massachusetts

Company: Zevra Therapeutics, Inc.
Location: Boston, Massachusetts
Posted On: 05/04/2025

About Zevra Therapeutics, Inc.

We are a rare disease therapeutics company leading with science to make life-changing therapeutics available to patients with significant unmet needs. We involve key thought leaders, physicians, patients, care partners, and advocacy groups in all of our clinical and regulatory development strategies.

With a keen understanding that drug development often requires creative solutions, we have the insight and expertise to forge new pathways to success that others have missed. By following the data without bias, our transparent narratives and common-sense perspective have successfully overcome complex development challenges to make much-needed therapies available to patients.

Nimble and dauntless, we push boundaries beyond what is thought to be possible and advance new therapies that have the potential to bring meaningful improvement to patients' lives.About the roleThe 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.What you'll do

• 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 cultureQualifications
  • 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
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