Program Coordinator, Siegel Rare Neuroimmune Association

The Siegel Rare Neuroimmune Association (SRNA) is seeking to hire a full-time Program Coordinator to support SRNA’s research and educational initiatives. Reporting to the Education Program Manager, this position will coordinate day-to-day activities across multi-site research collaborations and SRNA educational programs, support engagement with research participants and community stakeholders, and contribute to the development and dissemination of research and health information for the rare neuroimmune disorder community. The successful candidate will work closely with SRNA leadership, research sites, clinicians, community members, and external partners to support effective implementation of both research and education initiatives. The Siegel Rare Neuroimmune Association (SRNA) is a not-for-profit organization dedicated to the support of children, adolescents, and adults with rare neuroimmune disorders including acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM). Our stakeholders include individuals diagnosed with a rare neuroimmune disorder and their families and friends, clinicians, scientists, medical professionals, supporters, and related interested organizations. Our goal is to improve the quality of life of individuals and families living with these rare neuroimmune disorders. Learn more about SRNA at wearesrna.org. Key Responsibilities Serve as a day-to-day point of contact for participating research sites, including SRNA’s Centers of Excellence in Rare Neuroimmune Disorders (CERNDs), coordinating timelines, deliverables, information requests, project documentation, and study milestones. Support participant recruitment, retention, and engagement activities for SRNA-supported research initiatives, including coordination of Community Advisory Board meetings, preparation of materials, documentation of feedback, and follow-up. Collect and organize participant and community feedback to inform research implementation, educational materials, and dissemination. Coordinate research and program meetings with research sites, clinicians, investigators, community members, and other partners, including scheduling, agendas and materials, meeting documentation, action items, and follow-up; maintain related project records and timelines. Support the coordination and implementation of SRNA educational initiatives, including online learning, educational events and symposia, podcasts, and other community education programs. Assist with the development, review, updating, and organization of educational resources for individuals and families affected by rare neuroimmune disorders, healthcare professionals, and other audiences. Support the development and dissemination of plain-language, accessible, and culturally responsive research and educational materials through summaries, podcasts, presentations, online learning, and other SRNA communication channels. Track research and education program activities, recruitment and engagement metrics, participant and community feedback, milestones, and other outcomes to support evaluation, reporting, and continuous improvement. Support effective communication and coordination among research sites, community stakeholders, SRNA staff, and external partners throughout the implementation of research and educational initiatives. Perform other related duties as needed to support SRNA’s research, education, and community programs. Experience and Qualifications While no one person will have all the qualities listed below, the successful candidate will bring many of the following qualifications and attributes: A desire and ability to support and learn from the community of individuals and families affected by rare neuroimmune disorders. Bachelor’s degree in public health, health education, health sciences, neuroscience, biomedical sciences, or a related field. 2–3 years of experience in research coordination, health education, nonprofit programming, healthcare, or a related setting preferred. Strong project coordination, organizational, and interpersonal skills, with the ability to manage multiple deadlines and stakeholders, maintain accurate documentation, work independently, and collaborate effectively with researchers, clinicians, community members, and organizational partners. Strong written and verbal communication skills, with the ability to communicate research and health information clearly to diverse audiences. Excellent attention to detail and the ability to maintain organized project records, timelines, meeting materials, and follow-up activities. Self-disciplined, driven, able to demonstrate initiative, and able to work collaboratively across a virtual team environment. High standards of ethics, integrity, and professionalism, including appropriate handling of sensitive, confidential, participant, and research information. Ability to communicate in English, both verbally and in writing required; multilingual preferred. Preferred: Experience with multi-site research, IRB/research administration, community-engaged research, participant engagement, or related research activities. Technical proficiencies: Word, PowerPoint, Excel, project management software, WordPress, virtual meeting platforms, familiarity with AI-assisted tools, and comfort working with digital collaboration and content systems. Additional Information Location is remote, based on where the Program Coordinator resides Full-time position: 40 hours per week Involves travel in the US 1–3 times a year Requires some flexibility with occasional evenings and weekends due to programming Deadline Applications will be processed on a rolling basis until the position is filled. Start Date: Immediately Geographic Eligibility: SRNA is a fully remote organization. Due to state-specific employment and compensation requirements, we are currently unable to consider applicants who will work from Alaska, California, Colorado, New York, or Washington. Please note that only those individuals whose qualifications match the current needs of the organization will be considered and notified by email. The Siegel Rare Neuroimmune Association is an equal opportunity employer. It is the continuing policy of the SRNA to provide equal-opportunity employment to all staff members and applicants, without regard to race, creed, color, sex, religion, national origin, citizenship, age, veteran status, disability, pregnancy, sexual orientation, and any other protected categories. This policy relates to all employment decisions, including those in connection with recruitment, hiring, training, promotion, compensation, benefits, termination, and all other terms and conditions of employment. All of our policies are in accordance with federal, state and local equal employment opportunity principles and other related laws.