Director Patient Education & Engagement at Children's Tumor Foundation – New York, New York

The Children’s Tumor Foundation (CTF) is not a traditional research foundation. We operate as a patient-centered drug discovery engine for NF, a group of genetic conditions that cause tumors to grow on nerves affecting 1 in 2,000 individuals. We operate by accelerating the full continuum of scientific discovery, from basic research through translation to clinical trials and approved treatments — while empowering patients and building the financial infrastructure to support that journey. We catalyze progress by uniting academia, industry, regulators, and patient advocates around shared goals.

GENERAL SUMMARY

The Director of Patient Education & Engagement, reporting directly to the Vice President of Research Impact and Engagement, has a comprehensive skill set that combines healthcare expertise, strong communication skills, and patient-focused competencies.

The Director will create, develop, and oversee programs that educate and support patients and families with NF1 and SWN, including the planning and coordination of the annual NF Summit.

The Director of Patient Education & Engagement will have a strong understanding of health-related science and the ability to simplify complex scientific concepts and terminology for diverse audiences. The Director will support the Communication team in the development of educational materials for diverse audiences, working with the Science team to ensure content is accurate and current.

PRINCIPAL DUTIES AND RESPONSIBILITIES:

Patient Education & Support

• Support & collaborate with the communications team to develop educational materials for patients and caregivers.

• Collaborate with the Clinical Programs Manager to support the needs of the NF Clinic Network patient education programming.

• Oversee and coordinate the NF Knowledge Series, an educational webinar for the NF patient & caregiver community.

• Serve as a first point of contact for patients and families reaching out to CTF for guidance on their NF journey.

NF Summit Lead

The NF Summit serves as the CTF’s flagship event, uniquely blending cutting-edge clinical education with peer-to-peer networking to empower patients and families living with NF and Schwannomatosis.

• Oversee the full production of the Patient Summit from start to finish.

• Act as the primary stakeholder, ultimately accountable for all event deliverables, navigating a cross-departmental team to deliver a seamless, successful event.

• Oversee the implementation of the long-term vision and annual goals for the NF Summit to ensure it meets the evolving needs of the community and aligns with the vision and mission of CTF.

• Develop and maintain a comprehensive summit budget, ensuring cost-effectiveness while maintaining high production value.

• Work with key stakeholders to develop content that aligns with CTF’s mission and the needs of the community.

• Act as the primary lead during the event to troubleshoot issues and ensure a seamless experience for hundreds of attendees

Patient Engagement

Patient Engagement is the inclusion of the patient and caregiver voice in NF research and the view that people with NF are true partners in the research process.

• Working directly with CTF Engage which is a dedicated group of patient & caregiver volunteers focused on working with academic researchers and industry to elevate the lived experiences of the NF community.

• The Director of Patient Education and Engagement will oversee the continued growth of CTF Engage. Developing long-term measurable outcomes in alignment with the foundation’s mission & vision.

• In collaboration with the Science team, cultivate new pathways and opportunities for patient engagement in research, collaborating with internal and external stakeholders.

• Develop educational opportunities for CTF Engage volunteers, ensuring they are kept informed and engaged with the latest in NF research.

Stakeholder Collaboration

• Work with external partners to promote the foundation's commitment to NF research.

• Support projects that advance NF research and care.

Other duties as required.

MINIMUM QUALIFICATIONS

• Degree in health education, nursing, or other healthcare discipline.

• 5-10 years of experience in patient engagement and education.

• Strong collaboration skills with relation to working and collaboration with the Summit co-chairs and the R&D logistics team to coordinate/ manage large-scale or externally-focused meetings.

• Proven ability to clearly and concisely communicate information both verbally and in writing.

• Ability to break down medical information into simple terms.

• Strong organizational skills, with the ability to manage multiple projects simultaneously through prioritization and collaboration with key partners.

• Knowledge of HIPAA and human research regulations.

• Excellent interpersonal, time management, project management, and organizational skills.

• Excellent team management and cross-organizational collaboration skills, ability to work collaboratively internally and externally.

• Self-assured and results-oriented.

• Demonstrated ability to assess business needs, design and implement programs, and evaluate results.

Working Conditions, Equipment Used, and Special Information

Must have unimpeachable integrity and trustworthiness and possess remarkable tact, discretion, and professionalism. Verbal and written communication skills will be used daily. Maintains effectiveness under pressure. Ability to lift 25 lbs. Flexible for overnight business travel, 4-6 trips per year. Flexible to work evenings and weekends as needed.

Disclaimer

The above statements are intended to describe the general nature and level of work being performed by the person assigned to this position. They are not intended to be considered an exhaustive list of all responsibilities, duties and skills required.

Equal Employment Opportunity

CTF provides equal employment opportunities to all employees and applicants in all Foundation facilities without regard to race, color, religious creed, sex, national origin, ancestry, citizenship status, pregnancy, childbirth, (or related medical conditions, including, but not limited to lactation), physical disability, mental and intellectual disability, age, military status or status as a Vietnam-era or special disabled veteran, marital status, registered domestic partner or civil union status, gender (including sex stereotyping and gender identity or expression), medical condition (including, but not limited to, cancer-related or HIV/AIDS-related), genetic information, or sexual orientation under applicable federal, state and local laws. This policy applies to all terms and conditions of employment, including, but not limited to, hiring, placement, promotion, termination, layoff, recall, transfer, leaves of absence, compensation, and training.