Executive Director for a Rare Disease Foundation: Remote Leadership Opportunity | $90,000–$110,000 | Apply by 30 September 2026

Overview

A rare disease foundation in the United States is hiring a full-time, remote Executive Director. The foundation supports families affected by DDX3X syndrome. The Executive Director acts as chief executive officer, working closely with the Board of Directors and Scientific Advisors and alongside a part-time Chief Scientific Officer. The role centres on advancing research, improving clinical care, supporting families, raising awareness and strengthening the organization's long-term impact.

What you get

The annual salary is USD $90,000 to $110,000. Benefits include paid vacation, sick and personal leave, federal holidays off and a week off between Christmas and New Year's. The job is fully remote within the United States, with a start date of 1 January 2027.

Requirements

Applicants need a bachelor's degree, with an advanced qualification in nonprofit management, healthcare, public health, business or a related field preferred. They should have 7 to 10 years of progressive leadership experience in nonprofit management, healthcare, medical research, philanthropy or a related sector, along with experience managing organizations, budgets and teams, and a record in fundraising and partnership development. Strong strategic planning, financial management, communication and relationship-building skills are expected, as is experience working with boards and varied stakeholders. Knowledge of rare disease advocacy, biomedical research or patient organizations is highly desirable. Applicants must be able to work from the United States.

Responsibilities include putting the strategic plan into action with the Board and setting annual goals; overseeing daily operations, systems, policies and procedures; leading the research portfolio, including grant programs, scientific collaborations and strategic initiatives; supporting patient registries, natural history studies, education and family support; developing and managing the annual budget with financial reporting, forecasting and cash-flow oversight; working with external accountants and auditors; preparing Board reports and supporting committees; and representing the foundation to researchers, clinicians, advocacy groups, industry partners, government agencies, donors and the rare disease community.

How to apply

Candidates should prepare a résumé that highlights nonprofit leadership, strategic planning, fundraising, financial management, partnership development and organizational oversight, and apply through the application page.

Key dates

Applications close on 30 September 2026, and the successful candidate is expected to start on 1 January 2027.