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Patient Advocacy: Program and Volunteer Manager

Part-time Staff Position

Narcolepsy Network is the largest narcolepsy patient support and advocacy organization in the United States. We are establishing a new part-time position to support our growing organization. We seek a person with experience managing national or regional volunteer and advocacy, education and support programs, and overseeing local events. You will organize and build these programs to better meet the needs of people with Narcolepsy and Idiopathic Hypersomnia.


This position will report to the Transition Director. We will collectively set goals and strategies to scale. The role will:

  • Oversee Network Connections, which are regional events, focused on education, connection and support. This includes managing NYC education day and volunteers participating in the NYC Marathon.
  • Evaluate and build current peer-led support and self-advocacy programs.
  • Build contacts and further engage participants in our education awareness programs like Suddenly Sleepy Saturday and Share Your Story.
  • Manage volunteer and program participant relationships and establish a reporting system through Neon (our CRM).
  • Work with Communications and Operations Manager, and Transition Director, to build educational programs with deeper volunteer engagement and tracking.
  • Develop other mission related programs as identified.

Required Skills

  • 3-5 years of experience planning and delivering support and education programs preferably in the healthcare and/or advocacy space
  • 3-5 years experience managing volunteers. This includes the ability to establish clear policies and management practices when working with volunteers
  • Strong relationship building and communication skills
  • Experience managing small to midsize regional events
  • Team player who is adaptable and works well in a small, growing organization
  • Self-starter with ability to work in a small, entrepreneurial environment
  • Flexible in terms of work hours
  • Experienced with project management software such as Asana, and a CRM database like NEON
  • Experience in rare disease or patient organizations is highly desirable

This position is a remote position offering benefits and offers a competitive salary commensurate with experience. We are an equal opportunity employer and all qualified applicants will receive consideration for employment without regard to race, color, religion, sex, sexual orientation, gender identity, national origin, disability status, protected veteran status, or any other characteristic protected by law.

Job Location Remote, United States, Position Type: Part-Time / Regular

Please apply for this position here. We require the following documents: resume, cover letter, salary requirements and references. Applications are reviewed on a rolling basis.