Executive Director

Job Title: Executive Director

Organization: National Foundation for Ectodermal Dysplasia (NFED)

Mission: We empower and connect people touched by ectodermal dysplasias through education, support, and research.

Location: Flexible; Remote with travel expected (15-20%)

About The NFED: The National Foundation for Ectodermal Dysplasia (NFED) is a leading nonprofit organization dedicated to improving the lives of individuals and families affected by ectodermal dysplasias. Ectodermal dysplasias are a group of genetic disorders that affect the development of hair, skin, teeth, nails, sweat glands, and other ectodermal structures. The NFED provides comprehensive support, education, advocacy, and resources to empower those impacted by these conditions while driving awareness and funding research initiatives to find effective treatments and cures.

Position Overview: NFED seeks a visionary and experienced Executive Director who will report to the Board of Directors. The Executive Director will be responsible for advancing the NFED’s Mission through strategic leadership, including strategic planning, driving awareness, program development, research, fundraising, financial management, and overseeing all aspects of NFED’s operations. The successful candidate will possess empathy with the ability to understand and connect with the families we serve, interpersonal communication skills, managerial skills, organizational skills, strong leadership skills, a deep commitment to the NFED's mission, and a proven track record of driving organizational growth/impact.

The salary range is $125,000 —$135,000. The location is remote, with quarterly staff gatherings. Benefits include a health insurance stipend and 3% IRA matching.

Key Responsibilities:

Strategic Leadership:

●       Enhance the NFED’s leadership role in rare disease communities both domestically and internationally. Establish and maintain collaboration with researchers, pharmaceutical and patient health providers.

●       Develop and implement a long-term strategic vision and plan for the NFED in alignment with the organization's mission and values.

●       Provide leadership and direction to the staff, Board of Directors, and volunteers to ensure effective execution of the NFED’s strategic goals and initiatives.

●       Foster a culture of passion, innovation, collaboration, and accountability throughout the organization.

Program Development and Management:

●       Oversee the development, implementation, and evaluation of the NFED's programs/services that meet the needs of individuals and families affected by ectodermal dysplasias.

●       Drive research by advocating for and supporting research initiatives, sponsoring international research conferences, and collaborating on data platforms.

●       Identify emerging trends and opportunities in the field of ectodermal dysplasias and adjust programmatic priorities accordingly.

●       Ensure programmatic excellence and adherence to best practices and ethical standards.

Fundraising and Development:

●       Lead the NFED's fundraising strategy, including fostering major gifts, grants, corporate partnerships, and individual donations.

●       Cultivate and steward relationships with donors, sponsors, and other key stakeholders to support the NFED's mission and financial sustainability.

●       Develop and implement strategies to diversify the NFED's funding sources to increase revenue streams.

Advocacy and Public Relations:

●       Serve as the NFED's primary spokesperson and advocate, representing the organization to external stakeholders, policymakers, and the media.

●       Build and maintain relationships with government agencies, professional associations, and other advocacy organizations to advance the NFED's policy priorities.

●       Empower individuals and families to advocate for themselves and their communities to push for access and quality of care.

●       Enhance the NFED's visibility and brand awareness through strategic communications, marketing, and public relations efforts.

Financial Management:

●       Develop and manage the NFED's annual budget/financial plans and oversee responsible resource allocation.

●       Ensure responsible stewardship of organizational resources, financial sustainability, and compliance with financial regulations and reporting requirements.

●       Monitor financial performance and make data-driven decisions to optimize resource allocation and maximize strategic impact.

Qualifications:

●       Excellent communication, interpersonal, and leadership skills, with the ability to inspire and motivate staff, volunteers, and stakeholders.

●       Ability to communicate with people from all levels of an organization. Possesses the ability to connect with families, care providers, researchers, and board members.

●       Prefer a master’s degree and education/experience in areas of nonprofit management, health care, public health, business administration, or a related field.

●       Prefer 10+ years of experience in nonprofit leadership, with at least 7 years in a senior management or executive role, especially in the rare disease space.

●       Proven managerial skills for galvanizing multi-location team members.

●       Strong fundraising and financial management skills, with experience in securing major gifts, grants, and corporate sponsorships.

●       Proven track record of strategic planning, organizational development, and program management.

●       Experience working with a Board of Directors and engaging with diverse stakeholders and communities.

Travel and Works Schedule

●      This is a full-time position, working 40+ hours per week.

●      Travel and/or virtual meetings are required, with occasional regional, national, and international travel expected.

●      Staff retreats are held in-person twice annually, as well as annual conferences.

●      Some evening and weekend work may be necessary for conference(s), family engagement, and programs.

DiCam Strategic Solutions' CEO, Dianna Campbell, will lead the executive search. Please include your resumes, cover letters, and your NFED vision statement. Thank you, Dianna Campbell Dianna@DiCamSolutions.com.