Executive Director for a Rare Disease Foundation: Remote Leadership Opportunity | $90,000–$110,000 | Apply by 30 September 2026
An exciting remote executive leadership opportunity is available for an experienced nonprofit professional seeking to lead a rare disease foundation in the United States. The Executive Director will provide strategic direction, oversee organizational operations, strengthen partnerships, support research initiatives, and help expand services for families affected by DDX3X syndrome.
The position is offered on a full-time basis, with an annual salary of USD $90,000 to $110,000. The successful candidate is expected to start on 1 January 2027, while applications close on 30 September 2026.
About the Executive Director Opportunity
The Executive Director will serve as the foundation’s chief executive officer and work closely with its Board of Directors and Scientific Advisors. The role is focused on advancing research, improving clinical care, supporting families, increasing awareness, and strengthening the organization’s long-term impact.
This is a remote job, although applicants must be able to work from the United States. The position may appeal to senior professionals with backgrounds in nonprofit management, healthcare, medical research, philanthropy, public health, or related fields.
The Executive Director will also work alongside a part-time Chief Scientific Officer, creating an opportunity to combine organizational leadership with scientific and programmatic priorities.
Key Responsibilities
The successful candidate will take responsibility for a broad range of organizational functions.
Strategic Leadership
The Executive Director will implement the foundation’s strategic plan in partnership with the Board, identify opportunities for growth, establish annual goals, and provide leadership toward the organization’s long-term mission and vision.
Organizational Management
The role involves overseeing day-to-day operations while developing effective organizational systems, policies, and procedures. The Executive Director will help ensure that the foundation operates efficiently and remains focused on its priorities.
Research and Program Leadership
A major part of the position involves overseeing the foundation’s research portfolio. This includes grant programs, scientific collaborations, and strategic research initiatives.
The Executive Director will work with researchers, clinicians, scientific advisors, and institutional partners. The role will also support patient registries, natural history studies, educational programs, and family support initiatives.
Financial Management
The successful applicant will develop and manage the annual operating budget while overseeing financial reporting, forecasting, and cash-flow management. They will also work with external accountants and auditors to maintain financial transparency and compliance.
Board and Stakeholder Relations
The Executive Director will serve as the primary link between the foundation and its Board of Directors. Responsibilities include preparing Board reports, supporting committees, developing strategic updates, and implementing approved initiatives.
Externally, the Executive Director will represent the organization among researchers, clinicians, advocacy groups, industry partners, government agencies, donors, and the wider rare disease community.
Qualifications and Experience
Applicants should have a bachelor’s degree, while an advanced qualification in nonprofit management, healthcare, public health, business, or a related discipline is preferred.
Candidates should also have 7–10 years of progressive leadership experience in nonprofit management, healthcare, medical research, philanthropy, or a related sector.
Strong candidates should demonstrate experience managing organizations, budgets, and teams, as well as a proven record in fundraising and partnership development.
Excellent strategic planning, financial management, communication, relationship-building, and leadership skills are important. Experience working with Boards of Directors and diverse stakeholders is also required.
Knowledge of rare disease advocacy, biomedical research, or patient organizations would be highly desirable.
Salary and Benefits
The position offers a competitive annual salary of USD $90,000–$110,000.
Additional benefits include paid vacation, sick and personal leave, federal holiday time off, and a week off between Christmas and New Year’s. The position is fully remote within the United States.
How to Apply
Qualified candidates interested in this remote Executive Director job should prepare a strong résumé highlighting nonprofit leadership, strategic planning, fundraising, financial management, partnership development, and organizational oversight experience.
Job Title: Executive Director for a Rare Disease Foundation
Job Type: Full Time
Work Arrangement: Remote
Location: United States
Salary: USD $90,000–$110,000 per year
Start Date: 1 January 2027
Application Deadline: 30 September 2026
Education: Bachelor’s degree required
Experience: 7–10 years of progressive leadership experience
Apply here: Executive Director application page
Conclusion
This remote nonprofit leadership opportunity offers an experienced executive the chance to contribute to research, family support, healthcare advocacy, and greater awareness of a rare genetic condition. Candidates with strong leadership, fundraising, financial, research, and partnership-development experience are encouraged to apply before the 30 September 2026 deadline.
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Disclaimer: Remote Job Opportunities (RJO) is not the organization offering this opportunity. For any inquiries, please contact the responsible organization directly. Please do not send your applications to RJO, as we are unable to process them. Due to the high volume of emails we receive daily, we may not be able to respond to all inquiries. Thank you for your understanding.
