Chief Operating Officer

The opportunity: This is a hands-on leadership role for someone who enjoys building as much as managing. Some core systems need stronger structure; others still need to be created. You will bring clarity to priorities and help the CEO, board, staff, volunteers, and partners work together effectively. You will develop the senior leaders responsible for patient affairs, clinical programs, and development while owning internal operations, including finance, people operations, governance, compliance, contracts, technology, and risk. Working closely with the CEO, you will establish priorities, improve systems, engage outside expertise, and help shape how the organization operates as it grows. How we work Our values describe the kind of leader who will succeed here. We think big and act big in the urgent pursuit of a cure. We earn trust through integrity, transparency, discretion, and follow-through. We champion each other and keep patients and families as our North Star. We seize opportunities by listening widely and connecting science, patients, and partners in ways that move the work forward. What you will lead and accomplish Develop the senior directors responsible for patient affairs, clinical programs, and development, helping their teams and programs deliver even greater impact for the people and communities we serve. The position oversees a team of six, including three direct reports. Turn organizational priorities into clear plans, owners, dates, decisions, key performance indicators, and useful reporting for the CEO and board. Own people operations and the systems supporting a healthy remote culture, including our external human-resources and payroll partner, multi-state administration, hiring, onboarding, performance, and compensation. Lead budgeting and financial planning, oversee the outsourced bookkeeping partnership, strengthen internal controls, and coordinate an accurate audit and Form 990 process. Protect the trust of patients, donors, researchers, staff, and partners through sound governance, compliance, contracts, privacy, cybersecurity, and risk practices, including clear separation between the Alliance and its wholly owned subsidiary focused on disease-specific drug development. Build scalable systems for managing contracts, organizational risks, shared projects, and operational knowledge, and lead operations for our biennial scientific and patient meeting and staff retreat. Who will thrive in this role The strongest candidate will be an experienced nonprofit operator who combines strategic judgment with a willingness to remain hands-on and make complex organizations easier to run. Eight or more years in nonprofit operations, administration, or business management, including at least three years with organization-wide responsibility. Experience leading and developing senior professionals and programs through clear goals, useful coaching, and consistent accountability. Working knowledge of nonprofit finance, including budgets, restricted funds, audits, and Form 990, with the ability to oversee a bookkeeping partner and read financial statements critically. Sound judgment in governance, risk, contracts, and when legal review is needed. A record of building practical systems, templates, and technology standards that make a small, remote organization easier to run. Clear, concise writing; discretion with confidential information; and practical judgment about how and when to use AI tools appropriately to improve productivity. You may not bring every qualification listed, and that is okay. If you have substantial experience in several of the role’s core areas, strong leadership judgment, and the ability to learn quickly, we encourage you to apply. Experience that would be helpful Work in rare disease, patient advocacy, research funding, or another science-focused nonprofit. Experience with a parent-subsidiary structure and cost allocation between related entities. What you do not need You do not need to be a CPA or attorney, have regulated drug-development, GxP, or FDA-submission experience, or have led a large team. Success in a small organization with limited infrastructure may be more relevant than experience supported by separate finance, HR, and IT departments. Ready to make a difference? If you are energized by the opportunity to strengthen a growing organization, develop talented people, and help accelerate progress toward a cure, we would be excited to hear from you. Compensation and work environment Salary range of $125,000 to $145,000, depending on experience, plus a telecommuting stipend. Medical, dental, and vision coverage available; retirement benefits with 3% employer contribution; and paid time off. A fully remote position within the United States, with some schedule flexibility. Occasional travel for annual scientific and patient meetings, staff retreat, and professional conferences. A small, experienced team whose work reaches patients and families living with a serious diagnosis.