Executive Director, RareKC

Reports To: CEO of BioNexus KC and RareKC Board of Directors
Compensation Range: $110,000 – $130,000 annually; Exempt
This position is full time and eligible for benefits.
Accepting applications through Monday, July 20, 2026.

Desired Start Date: September 1, 2026

Role Summary

The RareKC Executive Director is the rare disease initiative’s chief operator and lead ambassador – owning execution, accountability, and outcomes. This role drives day-to-day performance across the RareKC initiative while building the relationships, visibility, and resources needed to expand impact across the region. The Director leads with urgency, precision, and initiative; sets clear priorities; and consistently raises the standard for excellence across programs, fundraising, marketing, and community engagement. The position reports directly to the CEO of BioNexus KC and the RareKC Board of Directors.

All applicants must complete this survey in addition to sending their resume to info@rarekc.org.

Responsibilities

Mission & Strategy:

• Translate mission into measurable programs and visible community impact.
• Design, improve, and implement RareKC programs that deliver meaningful outcomes for the rare disease community.
• Lead strategic planning and maintain a forward-looking roadmap that positions RareKC for long-term success.
• Elevate the brand and visibility of RareKC by being active, poised, and highly engaged across the community and partner ecosystem.

Financial Performance and Viability:

• Build and protect the financial engine that sustains RareKC. Own fiscal integrity, including annual budget development and submission to the Board, plus monthly financial reporting that clearly reflects organizational performance.
• Manage resources with discipline – operating within budget, maximizing utilization, and maintaining a strong financial position.
• Develop and execute an organizational development and fundraising plan that increases revenue, diversifies sources, and strengthens long-term sustainability.

Operations & Team Leadership:

• Create structure, clarity, and excellence in execution. Ensure effective administration of operations with clear processes, timelines, and accountability.
• Recruit, manage, develop, and retain high-performing staff; set expectations and follow through.
• Build repeatable systems that allow the organization to move fast without sacrificing quality.

Board Governance:

• Deliver mission-aligned leadership and high-trust communication. Lead organizational operations in a manner that advances the mission and strategic priorities established by the Board.
• Communicate proactively and concisely with the Board – providing timely, accurate information that enables sound decisions.
• Prepare meeting materials with strong attention to detail; anticipate questions; surface risks early; propose solutions.

Preferred Qualifications

• Bachelor’s degree or equivalent, high-impact professional/volunteer experience.
• Personal or direct connection to rare disease strongly preferred.
• Senior nonprofit leadership experience (or comparable leadership in a mission-driven organization).
• Proven budget ownership: preparation, analysis, decision-making, and reporting.
• Highly organized and execution-focused: planning, delegating, program development, and task facilitation.
• Able to communicate a compelling vision and align stakeholders – Board, donors, volunteers, and partners.
• Strong fundraising competency: donor strategy, relationship building, and stewardship.
• Confident collaborator and motivator; skilled at mobilizing volunteers and committees.
• Excellent written and verbal communication; polished and persuasive public speaking.
• Comfortable engaging diverse audiences; socially poised, outward-facing, and relationship-driven.
• Detail-oriented and quality-driven with a bias for action and continuous improvement.

Core Job Responsibilities:

• Plan, build, and execute the annual budget; track performance and adjust quickly.
• Lead day-to-day operations with high urgency and attention to detail.
• Serve as the primary spokesperson for the rare disease initiative – media, partners, and the public.
• Build and maintain strategic relationships with medical providers, donors, organizations, and constituents to accelerate mission outcomes
• Partner closely with the BioNexus KC CEO and the RareKC Board to drive policy decisions, fundraising initiatives, and regional/national visibility.
• Supervise and collaborate with staff; establish cadence, goals, and accountability.
• Own strategic planning and implementation; convert strategy into clear quarterly priorities and measurable deliverables.
• Oversee Board and committee meetings—agendas, materials, action items, and follow-through.
• Lead marketing and communications efforts; ensure message clarity, brand consistency, and strong community engagement.
• Review and approve contracts for services; ensure scope, cost, and deliverables are clearly defined.
• Develop and execute an organizational development and fundraising plan that increases revenue, diversifies sources, and strengthens long-term sustainability. This will include fundraising on the part of the Director.
• Execute other duties as needed to support the mission and direction of the Board.

Benefits

• 401(k)
• 401(k) Matching
• Health, Dental, Vision, and Life insurance
• Health Savings Account
• Paid time Off
• Parental Leave