Vice President, Global Patient Advocacy and Government Affairs

22 Oct, 2019


Vice President, Global Patient Advocacy and Government Affairs

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.

In order for patients to fully benefit from these transformative therapies, a series of critical issues must be addressed, ranging from accelerating diagnosis of genetic diseases, to forging innovative payment models that expand access. In bringing the first systemic life-saving gene therapy to patients, AveXis is poised to play a leading role in partnering with governments, patient advocacy groups, think tanks, and other critical stakeholders globally to create an environment that allows more patients to benefit from more gene therapies. The Vice President, Patient Advocacy and Government Affairs is charged with making this vision a reality.


  • Develops and leads the global strategy for the Patient Advocacy and Government Affairs programs related to our gene therapy platform.
  • Guides the translation of the strategy to relevant markets across the globe.
  • Leads the implementation of the Patient Advocacy strategy in the U.S. and E.U. major markets, with direct functional oversight of local personnel.
  • Partners closely with colleagues in Novartis (our parent company) to guide the implementation of our Government Affairs priorities in the U.S. and E.U. major markets.
  • Partners with patient advocacy groups, government leaders, and other strategic stakeholders to implement specific initiatives that advance our strategic objectives in areas of “common cause.” Specific focus areas include:
    • Advancing patient-focused drug development
    • Ensuring patients are able to access our therapies
    • Supporting the patient journey to improve health outcomes
  • Engages with patients in individual and group settings (e.g. focus groups) to generate insights into the patient experience; disseminates insights across AveXis to help ensure that everything we do is guided by an understanding of patient needs.
  • Serves as the primary point of contact with patient advocacy groups, building transparent, trust-based relationships.
  • Connects patient advocacy groups to AveXis associates in medical affairs, translational medicine, market access, and other functions to partner on key initiatives.
  • Supports patient communities by developing a comprehensive and compliant philanthropic giving program.
  • Collaborates with other functions and with Novartis colleagues to ensure comprehensive communication plans for patients and government stakeholders.


  • Bachelor’s degree required, MPH or graduate level degree preferred.
  • At least 8-10 years’ experience in patient advocacy, government affairs or related organizational settings, with significant international exposure.
  • Broad knowledge of the biopharma industry; understands key concepts related to drug development, HEOR, access and reimbursement, and commercialization.
  • Creativity and vision to define and advance best-in-class global advocacy and government affairs capability in a pioneering therapeutic space.
  • Strong strategic planning skills – able to identify and prioritize critical projects to drive AveXis’ strategy and address patient needs.
  • Demonstrated ability to successfully lead cross-functional strategic initiatives.
  • Strong interpersonal skills; builds relationships by identifying common goals and engaging in a transparent, trust-building manner.
  • Collaborative – connects internal and external stakeholders, serving as a facilitator and integrator (not a gatekeeper).
  • Strong written and verbal communication skills; articulates ideas clearly and tells compelling stories.
  • Ability to travel up to 30%.
  • The role must be based out of the Chicagoland area

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: 2019-10-22