• Patient Resource Manager (Northeast )

    Job Locations US-Remote
    Posted Date 2 months ago(5/16/2018 3:37 PM)
    Job ID
    # of Openings
  • Overview

    Ready to join a team committed to moving gene therapies into the clinical setting for patients and families devastated by rare neurological genetic diseases?  AveXis is advancing cutting-edge science to treat rare and life-threatening genetic diseases—starting with our clinical-stage, proprietary gene therapy candidate, AVXS-101. We are at the beginning of an incredible journey and are looking for passionate individuals to join us on this important mission.


    AveXis, Inc. is a clinical-stage gene therapy company, dedicated to developing and commercializing novel treatments for patients suffering from rare and life-threatening neurological genetic diseases. Our initial product candidate, AVXS-101, is our proprietary gene therapy product currently in development for the treatment of spinal muscular atrophy, or SMA, the leading genetic cause of infant mortality. The U.S. Food and Drug Administration, or FDA, has granted AVXS-101 Orphan Drug Designation for the treatment of all types of SMA and Breakthrough Therapy Designation, as well as Fast Track Designation for the treatment of SMA Type 1. In addition to developing AVXS-101 to treat SMA Type 1 and Type 2, we also plan to develop other novel treatments for rare neurological diseases, including Rett syndrome (RTT) and a genetic form of amyotrophic lateral sclerosis (ALS) caused by mutations in the superoxide dismutase 1 (SOD1) gene.


    The Patient Resource Manager (PRM), will report to the Director of Patient Resource Managers, and will be a key member of the Advocacy team. The successful candidate will be dedicated to the successful launch of a near term product candidate. He/she will work collaboratively with other key functions to ensure support of patient and family needs. The PRM will be responsible for participating in a cross functional team to implement the patient and family support programs. An inherent commitment to genuine patient centricity applied across different functions, and in all interactions, is necessary in this highly visible and collaborative role.

    Strategically, the PRM will be responsible for launching a gene therapy into a unique specialty market. Excellent communication skills are required, as well as the ability to work with diverse personalities, tailoring a customer service approach to the particulars of each situation.


    • Remain a patient advocate throughout every phase of treatment journey, identifying appropriate needs of families, and the SMA community
    • Possess unquestioned integrity and strong business ethics to ensure rigorous corporate compliance in all activities and communication
    • Support an access to therapy plan, keeping the family informed at each step of process by collaborating with Field Reimbursement Manager (FRM) aiming for “speed to therapy” results
    • Educate community on patient-focused programs (such as the Ambassador Program)
    • Establish and maintain relationships with Cure SMA chapter leads to ensure continuity in care
    • Develop and execute patient education events per the direction of the community, as well as attendance at national conferences, when applicable
    • Remain up-to-date on community resources available to educate SMA community on Gene Replacement Therapy (GRT) and SMA resources
    • Coordinate with family a personalized patient assessment based on needs (Nutritional, PT, OT)
    • Work collaboratively with internal and external stakeholders
    • Ensure all HIPAA requirements and policies are executed, by maintaining contact with patients and caregivers who have opted-in and ensure excellent customer service
    • Assisting in search for treatment specialist at a certified treatment center
    • Collaborate with FRM to ensure families/caregivers navigate the reimbursement pathway regarding insurance copays, out-of-pocket costs
    • Assist family in identifying external resources for laboratory monitoring, travel and logistics involved in treatment journey
    • Ability to be on-site to offer support and ensure treatment experience goes as seamless as humanely possible, getting families to the right place at right time.
    • 50-75% Travel patient visits, advocacy events, corporate meetings
    • Effectively manage regional field advocacy budget
    • Attends and/or coordinates AveXis team participation in local events (walks, galas, etc.)
    • Co-create resources with internal AveXis partners


    • Bachelor’s Degree, with preference for advanced degree or professional credentials, (Registered Nurse, Genetics Counselor, Allied Health Professional, Social Worker)Minimum of 5 years of experience in the pharmaceutical industry, with knowledge of reimbursement and distribution pathways, including launch experience in the rare disease space
    • Relevant experience in advocacy or patient/family engagement in healthcare industry
    • Strong knowledge and understanding of HIPAA regulations, OIG guidance in the rare disease space
    • A record of working effectively in a highly collaborative environment
    • Excellent organizational skills


    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.


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