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Executive Director- Non-Profit (Rare Disease)

San Diego, CA, USA

How to Apply


Position Summary:

The Executive Director provides professional leadership, staff management and financial oversight to the NPKUA. The ED is responsible for day-to-day activities and priorities that reflect the strategic plan of the organization which moves the mission and vision forward. The ED’s professional leadership at the NPKUA includes partnering with our volunteers to harness their passion and skills, to help maximize the impact of their work. The ED is ultimately responsible for all fundraising related activities including individual and major donors, foundation gifts, fundraising events and other revenue sources. The ED will also cultivate partnerships and alliances that will promote growth and awareness in and outside the PKU community.

This position is remote, with a staff of 4 full time and  2 part time employees working remote as well.

Areas of Responsibility: 

Essential Functions & Responsibilities:


  • Direct administration of financials, budget and operational plans. Other duties as required.



Board/Volunteer Engagement

  • Build and execute a compelling vision and collaborate with volunteer leaders and staff to achieve it, that ultimately drives both organizational and revenue growth for NPKUA.
  • Work with leadership volunteers to identify, recruit and engage volunteers who have potential to make an impact.
  • Build strong and effective partnerships with volunteers and supporters and help coordinate four quarterly board meetings a year with the Executive Committee.

Special Events/Fundraising

  • Collaboration, cultivation, identification, and recruitment of major revenue partners to maximize impact on special events and other fundraising campaigns.
  • Manage staff and execute fundraising tactics to meet revenue targets through all-event and non-event related fundraising including special events, individual and foundation gifts, mail appeals, and other activities.
  • Working with the Fundraising committee, identify new sources of revenue for the Organization. 


  • Oversight of and execution of communication strategy including marketing and promotion for fundraising events, NPKUA programs, industry related activities, and all activities related to the brand elements of the NPKUA.
  • Execute a yearly communications plan that includes social media channels, the website, and hard copy collateral and mailings.
  • Where relevant, partner with media outlets and cultivate relationships to maximize awareness of the NPKUA.

Team Management

  • Supervise staff and build a culture of collaboration, respect and teamwork in the workplace.
  • Inspire, lead and motivate a talented staff team; develop and sustain an inclusive and respectful work environment through all interactions with staff. Commitment to staff development and ability to create career/development plans for staff, with a view toward employee growth and retention.
  • Provide leadership to staff by facilitating communication across functional areas.
  • Maintain communication with Committee Members and Board Members.



Skills Requested:

  • BA/BS degree preferred.
  • 5 – 7 years of experience in not-for-profit executive leadership.
  • Rare Disease experience, a plus.
  • Demonstrated track record of successful fundraising experience that includes special events, corporate/foundation giving, donor cultivation, public relations, and stewardship.
  • Previous experience in the identifying, recruiting, and partnering with volunteers to achieve results.
  • Proven and applicable skills in strategic thinking, committee leadership, and volunteer development.
  • Experience in varied forms of communications including – mass media, advertising and community relations, as they relate to health care
  • Effectively multi-task, establish priorities, and work in a dynamic environment. Highly efficient in time management and meeting deadlines. Ability to work and make judgments independently and take initiative. Well-disciplined initiative-taker that is extremely resourceful.
How to Apply: 


Organization Info

Listing Stats

Post Date: 
Feb 2 2024
Active Until: 
Mar 2 2024
Hiring Organization: 
National PKU Alliance