Patient-Family Coordinator

The NEC Society Patient-Family Engagement Coordinator is responsible for facilitating and coordinating a robust engagement strategy for patient-families affected by necrotizing enterocolitis (NEC). This includes leading and maintaining communication with our Patient-Family Advisory Council as well as building, directing, and supporting the Patient-family Ambassador Program while working in collaboration with the NEC Society staff to further advance the organization’s research, education, and advocacy efforts.

Areas of Emphasis:

Engage the Patient-Family Advisory Council (PFAC) The PFAC was established in 2022 and provides a formal mechanism for patient-families to provide feedback and insight, incorporating patient-families’ lived experiences into all aspects of our work. Responsibilities include:

• Build a structure for the program that optimizes members’ enthusiasm to advance the NEC Society’s mission in honor of their children affected by NEC.
• Schedule and organize regular meetings to maintain engagement and communication.
• Assist in planning and executing fundraising campaigns, including providing tools and resources for PFAC members.
• Create a calendar of PFAC-specific activities that align with key NEC Society initiatives.
• Ensure all communication and interaction with families adhere to trauma-informed care principles.
• Connect PFAC members with NEC Society projects and initiatives based on their interests and skill sets.
• Lead and support PFAC members during specific campaign times, including NEC Awareness Month/Day (May) and End of Year (EOY) giving (Nov – Dec), etc.
• Create and track PFAC-specific expenditures.
• Develop criteria, timeline, and process to serve on the PFAC
• Support and facilitate the creation of multimedia resources, including videos, that humanize the NEC Society’s work

Engage the Patient-Family Ambassador Program This program engages patient-families who want to get involved with the NEC Society’s advocacy, community events, fundraising, and other initiatives but do not serve on the PFAC.

• Work with the NEC Society staff team and key leaders to create a comprehensive PF Ambassador program structure and marketing materials.
• Conduct outreach and recruitment to launch and expand the PF Ambassador program.
• Manage and respond to all inquiries about the PFAC and PF Ambassador programs.
• Develop and manage a comprehensive list of opportunities for PF Ambassadors to engage with the NEC Society in ways that align with strategic priorities and communicate accordingly.
• Lead and support PF Ambassador members during specific campaign times, including NEC Awareness Month/Day (May) and End of Year (EOY) giving (Nov – Dec).
• Create and track PF Ambassador-specific expenditures.
• Support and facilitate the creation of videos that humanize the NEC Society’s work
• Plan, coordinate, and implement, in partnership with the NEC Society staff team, an in-person biennial PF Advocacy Summit, that takes places during even calendar years, alternating with the NEC Symposium that takes place during odd calendar years

Additional Responsibilities

• Continually optimize engagement, opportunities to serve, and meet the needs of the NEC Society’s community of patient-families affected by NEC
• Monitor and engage the NEC Society Connects Facebook group.
• Represent the NEC Society at virtual meetings, including FCC Taskforce, GFCNI Parent, and NICU Parent Network.
• Potential opportunity to represent the NEC Society at events, as opportunities arise when the executive director or research director are not available
• With support from the staff team, secure funding for the NEC Society’s first biennually occurring Patient-Family Advocacy Summit, with a focus on advancing research, education, and advocacy – designed and implemented for patient-families affected by NEC to build community, collaboration, and action for a world without NEC
• Attend Research Roundtables and participate in staff projects.
• Follow and implement the NEC Society’s strategic plan and priorities.
• Support and collaborate with staff to optimize the organization’s ability to serve our community and advance our mission.
• Represent the NEC Society professionally at all times.

Qualifications

• Extensive knowledge of necrotizing enterocolitis from the perspective of families and/or clinicians working in NICUs.
• Exceptional communication skills, both oral and written, including the ability to learn and articulate complex medical research and scientific information for diverse audiences.
• Ability to work collaboratively and independently, problem solve, take initiative, set priorities, and handle multiple projects efficiently and effectively.
• Ability to accept feedback and adjust work accordingly.
• Build and maintain relationships with NEC Society’s partners, and other organizations that share and/or complement the NEC Society’s mission.

Qualifications- Attributes of a strong candidate include:

• Commitment to building a world without NEC and dedication to our babies and families
• At least 3 years of nonprofit experience or other directly relevant expertise
• Confidence working collaboratively with online platforms, including MailChimp, social media, and Canva
• Outstanding verbal and written communication
• Committed to prioritizing DEI and eagerness to safeguard our community and organization from current threats to research, science, health, and DEI
• Uphold and advance our organizational values:
  • Center the needs of patient-families
  • Advance research and science
  • Build an ever-more inclusive community
  • Collaboration
  • Leadership
• Enthusiasm to propose fresh ideas without prompting from leadership, acceptance of constructive feedback, and persistence to bring effective ideas to life
• Masterful project management skills utilized to work on multiple simultaneous projects with different deadlines, with a sharp eye on details, quality, and accuracy
• Ability to work both independently and collaboratively in a fast-paced environment with little oversight to execute the approved development plan
• Must pass pre-employment background check

Compensation and Benefits

• Salary range $70,000 – 83,000, commensurate with experience
• Seven observed national holidays and 80 hours of paid time off each year
• Optional participation in NEC Society’s employee benefits
• Flexible hours
• Uplifting team culture
• Remote work environment

NEC Society Inclusivity Statement

The Necrotizing Enterocolitis (NEC) Society is a 501(c)(3) nonpartisan organization that deliberately prioritizes diversity. We are committed to building an inclusive community where all individuals and groups belong. The NEC Society intentionally supports the empowerment of women, people from diverse backgrounds, the LGBTQ+ community, people with disabilities, and groups that have been historically marginalized. We are stronger together. Together, we are better equipped to build a more just, equitable world without this devastating disease. Join the global NEC community that’s bringing together families, healthcare providers, and diverse stakeholders to prevent NEC. We encourage all qualified candidates to apply for this position.

To Apply

Interested applicants should send an email to Hiring@NECsociety.org with “Patient-Family Coordinator” in the subject line and include:

• A cover letter to introduce yourself that answers the following questions:
  • Why is a world without NEC important to you?
  • Why do you want to work for the NEC Society?
  • What experience do you have working with small nonprofit organizations?
  • What are your salary requirements?
• Your resume
• A writing sample, such as how to engage a family who recently lost their child to NEC and has reached out to you asking how to honor their child in a way that helps build a world without NEC