Job Description

The Undiagnosed Diseases Network Foundation (UDNF) is seeking an Inaugural Chief Executive Officer (CEO) to grow the foundation from a new organization into a thriving nonprofit supporting an innovative network of clinical and research sites organized as a learning healthcare network. The CEO will be tasked with advancing the organization’s mission of improving access to diagnosis, research, and care for all with undiagnosed and ultra-rare conditions in partnership with the Board of Directors. Led by and for patients and their families, the UDNF aims to become the central resource for the undiagnosed and ultra-rare disease community.

Responsibilities
Leadership

• Articulate the vision, mission, unique value proposition, and overall strategy of the UDNF.
• Represent the UDNF in conversations with key partners, including the National Institutes of Health, current UDN leadership, and elected officials at the state and federal level, about the future of the network and care of patients with undiagnosed and ultra-rare diseases.
• Engage the National Institutes of Health and UDN leadership in establishing a clear, integrated governance structure for long-term UDN/UDNF partnership.
• Foster and maintain strong relationships with partner organizations, donors, undiagnosed patients and families, the media, UDN leadership and staff, and other stakeholders.
• Increase engagement of undiagnosed patient cohorts who have been historically underrepresented in research

Programs and Activities

• Facilitate completion of the 5-year UDNF strategic plan in collaboration with the Board of Directors.
• Design, procure funding for, and implement program plans in accordance with the strategic plan.
• Collaborate with the Board of Directors, consultants, staff (to be hired), and other stakeholders to implement, monitor, evaluate, and modify the UDNF’s initial programs.
• Report on the quality, reach, and effectiveness of programs to the Board of Directors and advisory boards.
• Hire staff and/or contractors to manage communication strategies with key stakeholders.

Fundraising

• Design, implement, and manage an aggressive fundraising plan that includes major gifts, corporation and foundation partnerships, individual giving programs, and grants. The annual UDNF budget is anticipated to grow to reach an estimated $3M by year 5.
• Ensure that the UDNF meets fundraising targets by establishing systems to track successes and challenges.
• Coach all board members, staff, and volunteers on how to tell the organization’s story to target audiences.

Board Development

• Build and strengthen board functions in partnership with the Board of Directors Executive Committee, including meetings, policy compliance, and committee development.
• Assist the Board of Directors in their operations, administration, planning, and information dissemination.
• Design, recruit, and onboard a Scientific Advisory Board and Patient/Family Advisory Board to inform the operations of the organization.

Operations

• Make recommendations regarding Human Resource management to the Board of Directors and implement approved plans.
• Develop and execute initial staff, contractor, and volunteer hiring, compensation, onboarding, and management plans.
• Initiate training for staff, volunteers, and board members on Diversity, Equity, and Inclusion (DEI) as they relate to nonprofit management and the undiagnosed community.
• Hire staff and/or contractors to establish proper hardware and software for fundraising, collaboration, document storage, communication, productivity, and accounting.

Financial and Compliance Management

• Design the annual budget for review and approval by the Board of Directors.
• Lead the development of a Board of Directors Finance Committee.
• Review financial documents, including but not limited to budgets, cash flow, income statements, balance statements, and statements of functional expenses with the Board of Directors.
• Design and oversee procedures to ensure that the organization remains on-target for the 990 return, audits, and compliance.
• Ensure the UDNF’s compliance with all relevant laws and regulations, including IRS and District of Columbia rules for nonprofit organizations.
• Collaborate with an outside accounting firm on bookkeeping, accounting, tax compliance, payroll, internal controls, bill pay, audit prep, grant management, and reporting.

Requirements and Skills
This position requires a dynamic, self-starting, hands-on leader with a passion for the UDNF mission. This individual will prioritize DEI in all aspects of organization operations and display humility, patience, diligence, and commitment to social and economic justice.

A bachelor’s degree is required, and an advanced degree is strongly preferred. A minimum of eight years of senior management experience in a leadership role is necessary. The ideal candidate will have a demonstrated record of successfully managing new nonprofit organizations, securing funding from public and private sources, partnering with board members, hiring and supervising staff, and building community relationships. Professional leadership experience with healthcare organizations is required.

Expectations
The Inaugural CEO will be expected to commit 30 to 40 hours per week and will primarily work remotely, with the potential for travel.

Questions and Application Submission
For questions or to apply please respond via email. Interested applicants should submit current resumes and letters of interest which describe their qualifications for the responsibilities outlined above.

About the UDNF
The UDNF is a new non-profit organization affiliated with the Undiagnosed Diseases Network (UDN) (https://undiagnosed.hms.harvard.edu/). Every year thousands of patients face uncertainty when healthcare providers are unable to discover the cause for their symptoms. Backed by the National Institutes of Health, the UDN seeks to provide answers for patients and families affected by these mysterious conditions. The UDN currently consists of 12 clinical sites around the United States, a coordinating center, a metabolomics research core, a genomic sequencing core, two model organism screening centers, and a biorepository. Over the last 10 years, the
UDN has evaluated over 2,000 patients and provided diagnoses for one-third of those enrolled.

Building on these successes, the mission of the UDNF is to improve access to diagnosis, research, and care for all with undiagnosed and ultra-rare conditions through close collaboration with the UDN. The UDNF aims to foster partnerships among patients, clinicians, and scientists to enhance the quality of life of undiagnosed and ultra-rare patients and families. We do this by mitigating barriers to equity and access in healthcare; setting standards for patient management; and bridging diagnosis and therapeutics as well as research and clinical care in undiagnosed and ultra-rare diseases. Led by and for patients and their families, the UDNF will become the central resource for the undiagnosed and ultra-rare community. From when a patient first experiences unexplained symptom to their 10-year anniversary of effective treatment, the UDNF will provide the resources, community, research and care they need to live their best lives.

Job Types: Full-time, Contract

Pay: $200,000.00 - $300,000.00 per year

Benefits:

• Flexible schedule

Schedule:

• Self-determined schedule

Work Location: Remote

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