Careers

Executive Director, UDNF

 

Organization Overview

The Undiagnosed Diseases Network Foundation (UDNF) supports the mission of the Undiagnosed Diseases Network (UDN) by providing vital resources, patient advocacy, and innovative programming. The UDNF is dedicated to fostering collaboration among patients, clinicians, and scientists to enhance the quality of life of undiagnosed and ultra-rare disease patients.

Position Overview

The Executive Director will be a dynamic, entrepreneurial leader, driving visionary growth and operational excellence for UDNF and ensuring the organization’s goals align with its mission to support the UDN and patients with undiagnosed and ultra-rare diseases. This individual will lead the development and implementation of strategies that foster patient-centered initiatives, organizational growth, and impactful collaborations with the UDN. A key focus of the role will be securing financial resources to sustain and grow the UDNF and directly support the UDN.

Key Responsibilities

 

Strategic Growth

  • Strategic Planning: Develop and execute strategic plans to grow the organization’s impact and ensure alignment with its mission and vision.
  • Collaboration with UDN: Act as the operational liaison between UDNF and UDN to maintain alignment on shared goals.
  • External Representation: Serve as the key representative of UDNF, engaging with funding organizations and individuals and national partners, including the National Institutes of Health (NIH), UDN leadership, elected officials, and other stakeholders. Advocate for the future of undiagnosed disease care and the UDNF’s role in advancing the field.

 

Operational Leadership

  • Operational Efficiency: Oversee processes to ensure efficient management of resources, communication, and program execution.
  • People Management: Recruit, develop, and retain a high-performing team while fostering a culture of collaboration and excellence.
  • Human Resources: Make recommendations on human resources management and implement approved staffing, compensation, and training strategies. Ensure organizational alignment with DEIB principles
  • Board Relations: Collaborate with the UDNF board to ensure strategic alignment, effective governance, and regular communication. Actively participate in collaboration with the UDN board including development of sources of financial support for the UDNF..
  • Compliance: Ensure adherence to legal, regulatory, and ethical standards across all operations.

 

Patient-Centered Focus

  • Patient Navigation: Oversee and evaluate navigation services to assist patients and families in accessing care and resources.
  • PEER Coordination: Manage and enhance the Patient Empowerment and Engagement Resource (PEER) program.
  • Program Development: Implement new programs and initiatives that support patient advocacy, education, and engagement.

 

Financial Sustainability

  • Cultivating Major Donors: Build relationships with high-net-worth individuals, philanthropic funders and organizations passionate about rare disease research and advocacy.
  • Grant Writing & Acquisition: Identify and pursue grant opportunities from public and private funding sources.
  • Corporate Partnerships: Establish partnerships with corporations and foundations aligned with our mission.
  • Campaign Leadership: Design and execute fundraising campaigns, including annual appeals, capital campaigns, and special events.
  • Stewardship: Ensure donors are recognized, engaged, and informed about the impact of their contributions.
  • Storytelling & Engagement: Coach team on effective storytelling to engage potential donors and partners, building a compelling case for support.

 

Qualifications

  • Proven leadership experience in nonprofit management, preferably in healthcare, rare diseases, or patient advocacy.
  • Demonstrated success in fundraising, including major gifts, grant writing, and corporate partnerships.
  • Experience in partnering with academic medical centers.
  • Strong strategic planning, program development, organizational, and problem-solving skills.
  • Experience with financial management, HR, marketing/communications, and IT oversight.
  • Experience with implementing health equity strategies and initiatives is ideal.
  • Leader must have an entrepreneurial spirit.
  • Exceptional relationship-building skills, with a focus on collaboration and stakeholder engagement.
  • Bachelor’s degree required; advanced degree preferred.


Compensation

Salary range: $220,000 – $250,000 annually, depending on experience (DOE).

Application Process

Interested candidates should submit a resume, cover letter, and a list of three references to [email protected]. Applications will be accepted until March 14, 2025.