Executive Director – Hands-On Leadership Role | ECD Global Alliance

The ECD Global Alliance (ECDGA) is seeking a hands-on, action-oriented Executive Director to lead our small but impactful nonprofit organization dedicated to supporting individuals affected by Erdheim-Chester Disease, a rare condition with a global reach.

This is not a typical executive role. While the title is Executive Director, this position is very much boots-on-the-ground. We are a small team of 3, and we need someone who is ready to lead and contribute directly—handling strategic planning, fundraising, outreach, events, and daily operations.

We are a stable and established nonprofit, proud of what we've accomplished:

• Supporting over 1,000 families in more than 76 countries
• Hosting patient and medical symposiums with global participation
• Driving awareness and research progress for ECD worldwide

Now, we are ready to grow further. We are looking for a leader who can take ECDGA to the next level, helping us evolve into a more mature, sustainable nonprofit while continuing to serve our community effectively.

• Full-time, on-site in DeRidder, Louisiana
• Salary: $80,000 – $90,000 per year, plus vacation and sick leave
• Small, team-oriented environment with meaningful global impact
• A role for someone who enjoys variety and is comfortable working in all areas of a nonprofit
  

• 5 years of experience in nonprofit leadership or similar roles
• Strong skills in fundraising, team management, and community engagement
• Comfortable with a hands-on role that involves both leadership and day-to-day execution
• Passionate about making a difference in a mission-driven organization
• Ready to help build the future of ECDGA

If you are looking to make a real impact and grow with an organization that has already made significant progress for rare disease patients around the world, we want to hear from you.

Please send your resume and cover letter to support@erdheim-chester.org.