Director, US Patient Advocacy & Government Affairs, Strategy & Operations

22 Jul, 2020


Director, US Patient Advocacy & Government Affairs, Strategy & Operations

Bannockburn, IL

Ready to join a team committed to developing and commercializing gene therapies for patients and families devastated by rare neurological genetic diseases? AveXis is advancing cutting-edge science, starting with our proprietary gene therapy for the treatment of spinal muscular atrophy (SMA). We are in the midst of an incredible journey and are looking for passionate individuals to join us on this important mission.


AveXis, a Novartis company, is dedicated to developing and commercializing novel treatments for patients suffering from rare and life-threatening neurological genetic diseases. Our initial product is a proprietary gene therapy approved by the US Food and Drug Administration for the treatment of pediatric patients with SMA. In addition to developing a treatment for SMA, AveXis also plans to develop other novel treatments for rare neurological diseases, including Rett syndrome and a genetic form of amyotrophic lateral sclerosis caused by mutations in the superoxide dismutase 1 (SOD1) gene.


The Director, US Patient Advocacy & Government Affairs, Strategy & Operations will be responsible for leading high-impact initiatives and compliant operations. The role will advance multiple aspects of effectiveness of the Patient Advocacy function by leading cross-functional initiatives, organizing key gene therapy policy-focused advocacy initiatives such as newborn screening, leading effective internal and external stakeholder communication, managing the budget, and external giving.


  • Provide strategic and tactical support for annual and launch plans; collaborate on cross-functional execution.
  • Directly lead newborn screening initiatives and pilots and other special projects.
  • Create and maintain standard operating procedure modules and best practices to support functional evolution.
  • Develop and maintain timelines to track program activities, develop contingency plans and risk mitigation.
  • Support the development and drive the execution of AveXis US Advocacy best-in-class vision. Prepare leadership presentations.
  • Operate with a strategic focus and ensure cross-functional accountability for workflow deliverables.
  • Identify and anticipate issues that threaten to delay timelines, resolve issues and course correct when needed.
  • Manage projects, inspire and track cross-functional collaboration, provide regular progress updates to relevant colleagues.
  • Distill key outcomes from internal or external meetings and communicate to the broader team to ensure the entire team remains updated and aligned.
  • Interface and maintain strong partnerships with other Novartis divisions, teams and functions to identify points of synergy and trends.
  • Collaborate with other functional leads to continuously advance the impact of the Advocacy function in line with the highest integrity and compliance standards.
  • Oversee and be accountable for all team sponsorships, grants, and vendor engagement and payment processes from start to finish, including compliance reporting.
  • Hold responsibility for US Advocacy team financial planning, budget management, timely execution and payment, resolving delays or conflicts.


  • Bachelor’s degree required; Project Management Institute (PMI) Project Management Professional (PMP) certification preferred.
  • 8 years of pharmaceutical industry experience with responsibility for managing grants and sponsorship budget; as part of the government affairs, policy, advocacy department, or Management Consulting experience preferred.
  • Strong business acumen with a working knowledge of when to reach out to which cross-functional partners.
  • Strong project management skills and proven ability to independently drives projects forward, establish budget and timeline, keep track of tasks, prepare for meetings, follows up, and demonstrate accountability.
  • Expert understanding of industry compliance requirements and ability to directly make and manage funding decisions.
  • Effective negotiation skills with the ability to solve conflicts or challenges in a timely manner and demonstrated sound judgement.
  • High standards of excellence and attention to detail with ability to function with little support; hard working with a can-do attitude.
  • Ability to prioritize self and others on the most critical activities to drive impact.
  • Demonstrated ability to successfully drive and collaborate on cross-functional strategic initiatives.
  • Strong interpersonal skills; builds relationships by identifying common goals and engaging in a transparent, trust-building manner.
  • Strong written and verbal communication skills, including the ability to summarize complex issues concisely and appropriately and handle confidential information with discretion.
  • Travel is estimated at 25%.

This position is based in Bannockburn, IL location.


The level of this position will be based on the final candidate’s qualifications.


Please note this job description is not designed to cover or contain a comprehensive listing of activities, duties or responsibilities that are required of the employee for this job. Duties, responsibilities and activities may change at any time with or without notice.


AveXis is committed to creating a diverse environment and is proud to be an equal opportunity employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, gender, gender identity, national origin, genetics, disability, age, sexual orientation or veteran status.

Learn more here

Job posted: 2020-07-22