Be the Bridge Between Science and Hope
The National Foundation for Ectodermal Dysplasias (NFED) is seeking a passionate, collaborative leader to serve as our Director of Research. This is your opportunity to make a lasting impact in the rare disease community by connecting groundbreaking research with the families who need it most.
About This Role
As Director of Research, you’ll facilitate collaborations that transform scientific discoveries into real answers for individuals and families affected by ectodermal dysplasias. You’ll work alongside world-class researchers, dedicated advocates, and resilient families to shape the future of patient-centered rare disease research.
Who We’re Looking For
You’re a strong fit if you:
- Have 3-5 years of experience in patient advocacy, healthcare research, and/or rare disease organizations
- Hold an advanced degree (Master’s or Doctorate) in Public Health, Health Policy, Life Sciences, Social Sciences, or a related field
- Excel at communicating with diverse audiences—from scientists and clinicians to families facing new diagnoses
- Possess exceptional organizational and project management skills
- Lead with empathy, collaboration, and genuine passion for patient advocacy
- Understand research methodologies and patient-centered research design
- Are eager to learn, innovate, and bring fresh perspectives
What We Offer
Competitive Compensation & Benefits
- Salary: $75,000-$85,000
- Health benefit stipend
- Healthcare Flexible Spending Account (FSA)
- Employee-matching IRA
- Generous paid time off
- Professional development support
- Remote/hybrid work flexibility
Meaningful Work Join a passionate, mission-driven team dedicated to enriching the lives of people affected by ectodermal dysplasias through community, education, support, advocacy, and groundbreaking research.
Ready to Apply?
We’re excited to learn more about you and how your skills, experience, and passion align with this opportunity.
Application Requirements:
- Resume/CV
- Cover Letter
- Three Professional References
Application Deadline: April 6, 2026
At this time, we have received a sufficient amount of applications and have closed the search. Thanks to all who expressed interest and applied.
Questions?
Contact:
Greg Klimovitz, Executive Director
Email: greg@nfed.org
Phone: 618-566-6876
Our Commitment to Diversity
NFED is an equal opportunity employer committed to building a diverse and inclusive team. We especially encourage applications from individuals with lived experience of ectodermal dysplasias or other rare diseases, as your perspective enriches our mission. We welcome candidates from all backgrounds, identities, and experiences.