Patient & Community Support Specialist; Part-Time

St. Charles, IL (Hybrid/Remote Options Available)

NF Midwest is seeking a Patient & Community Support Specialist to help strengthen support, education, and connection for individuals and families affected by neurofibromatosis (NF).

This is a program-focused, relationship-driven role for someone who is passionate about improving how individuals and families navigate complex medical conditions. You’ll play a key role in developing educational programs and resources—including online and in-person learning opportunities—while also engaging with community members to provide guidance and support when needed.

You’ll help bridge the gap between patients, information, and care—developing meaningful educational offerings, collaborating with clinics and researchers, and ensuring individuals feel informed, supported, and connected.

Because we are a small nonprofit, this role is flexible and may evolve based on organizational priorities and your experience and interests. This position is ideal for someone seeking meaningful, part-time work with flexibility and the opportunity to make a real difference.

• Plan, develop, and support educational programs and resources for individuals and families affected by neurofibromatosis (NF), including online and in-person events
• Lead or coordinate educational meetings, discussions, and learning opportunities that address community needs
• Develop, update, and refine educational materials, resource guides, and outreach content
• Collaborate with clinics, medical professionals, and researchers to support educational initiatives and connect the community to relevant care and research opportunities
• Identify gaps, emerging needs, and opportunities within the community, and help develop responsive programs, resources, and solutions
• Engage with individuals and families as needed to provide guidance, share resources, and offer support
• Serve as a knowledgeable and approachable point of contact for community questions and needs
• Partner with team members to enhance education, programs, and overall community engagement efforts
• Maintain accurate records of programs, interactions, and community engagement within databases and CRM systems
• Support program and event implementation, including occasional travel
• Participate in occasional evening meetings and weekend activities as needed

• Strong interpersonal skills and ability to build trust with individuals and families
• Excellent communication skills, with the ability to explain information clearly and compassionately
• Highly organized and able to manage multiple priorities
• Self-motivated and comfortable working independently while collaborating with a small team
• Thoughtful and resourceful, with strong problem-solving abilities
• Comfortable using databases, CRM systems, and online platforms
• Professional, dependable, and able to handle sensitive information with care
• Valid driver’s license required

• Background in social work, nursing, genetic counseling, education, public health, or a related field
• Personal or family experience with NF or other complex medical conditions
• Experience in nonprofit, healthcare, or community-based settings
• Familiarity with patient support or care navigation

• Part-time: ~15–20 hours per week
• Flexible daytime schedule (generally between 9:00 AM – 4:00 PM)
• Occasional evenings and weekends

$23–$27/hour, with flexibility for candidates with strong relevant experience in healthcare, social services, or community-based support

• Mileage reimbursement for approved travel

• Preference for in-person work in St. Charles, IL
• Open to remote contractors with strong experience
• Must reside in: IL, IN, IA, KY, MO, MN, or WI

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