Executive Director

Job Type

Full Time




Details: Salary commensurate with experience. Competitive paid time off after 90 days of employment.



Start Date:


Application Deadline:



502 Delaware Avenue
New York
United States


CFC International, Inc., a growing not-for-profit serving families with individuals born with Cardio-Facio-Cutaneous syndrome, seeks a full-time Executive Director.

CFC International's mission: Improving the quality of life through family support, research, and education.

Job Summary:

The Executive Director is responsible for ensuring CFC International's financial growth, program development, strategic planning and day-to-day management. The Executive Director works closely with the Board of Directors, medical community, staff and volunteers in accomplishing these goals. The position has a flexible schedule and may be performed from a home office (telecommute).

Position Responsibilities:

  • Ensures that CFC International is in compliance with all federal, state and local laws and regulations.
  • Leads the Board of Directors (Board) and any assigned volunteers or future staff in the development and implementation of short and long-range plans and policies and other activities.
  • Develops and oversees the fundraising activities of the organization including identifying new opportunities, branding, promoting the organization, and cultivating relationships with potential funders.
  • Serves as the main liaison between CFC International and our 400+ families.
  • Manages the finances of the corporation, including the development and implementation of the annual budget, grant writing and working with the Board to achieve earned income and fundraising goals.
  • Negotiates and implements partnership agreements with other organizations including businesses, related nonprofits, government and educational institutions.
  • Markets and champions the work of CFC International throughout his/her local community, the United States, and across the world.
  • Provides information and recommendations to the Board with respect to the creation of policies, programs, and strategic direction of the corporation while providing logistical support for all Board activities.
  • Administers the overall operation of the corporation, including website updates, constituent database management, revisions of literature, reviewing and evaluating the results of program activities, ensuring that continuing contractual obligations are being fulfilled, allocating resources for greater program effectiveness and efficiency, and developing organizational and administrative policies and program objectives for Board consideration.
  • Works with the Medical Advisory Board to identify membership, research opportunities, and information that is relevant and necessary to individuals affected by CFC.
  • Acts as a staff ambassador to committees of CFC International, providing relevant and timely information that impacts the community, as well as assistance in achieving their strategic goals.
  • Manages the CFC International Family & Medical Conference hosted every two years, which includes development and implementation of resources and speakers needed to carry out the agenda, sponsorships, marketing, and grants.
  • Manages volunteers, contactors, and any future paid staff including; hiring and developing employees; training, planning, assigning and directing work; appraising performance; rewarding and disciplining; addressing complaints and resolving problems.

Qualifications Required:

Minimum of five years of responsible leadership experience required, preferably at least two of which have been in a staff or volunteer supervisory capacity.

Demonstrated success in fundraising and marketing.

Bachelor’s Degree required. Master’s degree in related field, or commensurate work experience preferred.

Some experience in the following areas are a plus: healthcare, rare disease community, or advocacy.

Reports to: CFC International Board of Directors

Time Commitment: Day-to-day schedule is flexible and task-oriented with regular meetings but no set hours required.

Location: Virtual/Telecommute. Location of home office is currently New York State but location may be flexible.

CFC International is an Equal Opportunity Employer

Professional Level

None specified

Minimum Education Required

4-year degree

How To Apply


The full job description can be found at cfcsyndrome.org. 

To apply, send a CV or resume and cover letter to jobs@cfcsyndrome.org