Are you a driven, roll-up-your-sleeves leader who thrives in dynamic, small-team environments? Do you want to make a real difference in the lives of people affected by a rare disease—while wearing many hats and taking action every single day? The Erdheim-Chester Disease Global Alliance (ECDGA) is looking for a hands-on Executive Director who’s ready to dive in, lead, and work side-by-side with a small, passionate team.
This is not your typical “white-collar” executive role. While the title is Executive Director, this position is boots on the ground, highly involved, and multi-faceted. You’ll be managing day-to-day operations and doing the work—fundraising, outreach, event planning, and more. Think of it as part leader, part doer. If you’re looking for a desk-bound, top-down management job, this isn’t it. But if you love being deeply involved, taking initiative, and leading a mission that truly matters, read on.
About Us
ECDGA is a 501(c)(3) nonprofit that supports those affected by Erdheim-Chester Disease (ECD)—a rare, often misunderstood condition. Though small, we have a global reach, supporting over 1,000 families in 76 countries. Our mission: awareness, support, education, and research.
We are a tight-knit team of just 3 dedicated staff and a supportive Board of Directors. Our organization may be established, but we operate like a startup—nimble, passionate, and constantly evolving.
The Role: Executive Director (Hands-On Leader)
As our Executive Director, you will be in the trenches, leading and doing. You’ll oversee the organization, but also roll up your sleeves and manage nearly every function—from fundraising and public relations to administrative tasks and strategic planning.
What You’ll Be Doing
- Lead by doing—you’ll guide strategy but also make calls, write emails, plan events, and handle day-to-day details.
- Work closely with a small, committed staff to ensure the smooth running of all programs and operations.
- Fundraising: Build relationships with donors, write grant proposals, and organize campaigns.
- Public engagement: Speak at events, manage outreach, and represent ECDGA to the world.
- Operations: Oversee budgets, compliance, and program effectiveness, ensuring we meet our goals.
- Community support: Engage directly with patients, families, and medical professionals.
Who You Are
- A self-starter who thrives in small, fast-paced environments.
- Someone who’s not afraid to wear many hats—from strategic planning to event logistics.
- A builder who’s excited to help a growing nonprofit mature and expand.
- A people person who can connect with donors, patients, volunteers, and stakeholders.
- Passionate about making an impact in the rare disease community.
Experience & Skills
- 5+ years in nonprofit leadership or similar hands-on roles.
- Strong background in fundraising, team leadership, and project management.
- Comfortable working remotely, with flexibility and independence.
- Excellent communicator—both written and verbal—with great interpersonal skills.
- Willingness to travel as needed for events and outreach.
- Experience working in a small team or startup environment is a plus.
Compensation & Benefits
- Salary: $80,000 – $90,000 per year.
- Paid vacation and sick leave.
- Work remotely, with a flexible schedule.
- Be part of a mission-driven, supportive team making a global impact.
Why This Role Matters
At ECDGA, we’re not just running an organization—we’re supporting real people facing an incredibly difficult diagnosis. We’re small, but our work changes lives. This role is your chance to lead, build, and make a meaningful difference every single day.
Our Journey So Far & Looking Ahead
While ECDGA is a small nonprofit, we are proud to say that we are a stable and well-established organization with a solid foundation. Over the years, we’ve achieved significant milestones in the fight against Erdheim-Chester Disease, including:
- Supporting a global community of over 1,000 families in more than 76 countries.
- Partnering with leading medical professionals and research institutions to advance understanding and treatment of ECD.
- Hosting successful international annual events, including patient and family gatherings and medical symposiums.
- Creating a global Referral Care Center Network to provide patients access to knowledgeable and caring medical teams who can best manage this very complex and rare blood cancer.
Despite our size, we’ve made a real, lasting impact. We are financially sound, mission-focused, and deeply committed to continuing our work for the ECD community.
Taking ECDGA to the Next Level
While this role is very much hands-on, we are also seeking a leader who can help us evolve. Our goal is not to remain in “startup mode” forever. We want our next Executive Director to help us build upon our success and guide us toward the next level of nonprofit management—ensuring long-term stability, sustainability, and growth.
We’re looking for someone who can balance the day-to-day needs of a small team with big-picture thinking—someone who will honor our grassroots beginnings while positioning ECDGA for a strong, thriving future.
If you’re ready to be part of an organization that’s already making a difference—and to help it grow even stronger—we’d love to hear from you.
How to Apply
If this sounds like you, please send your resume and a cover letter explaining why you’re the perfect fit to support@erdheim-chester.org.
The Erdheim-Chester Disease Global Alliance (ECDGA) does not provide medical advice, diagnoses, or treatments. All content is for informational purposes only. Please consult with a healthcare provider for medical concerns.