Be the One Who Tells Our Stories!
Are you a creative communicator with a heart for making a real difference? Do you believe that great storytelling can educate, connect, and inspire a global community? The National Foundation for Ectodermal Dysplasias is looking for a Director of Communications to lead how we share our mission with the world.
As a member of our senior leadership team, the Director of Communications will serve as a creative thought partner to the Executive Director and lead all NFED communications, marketing, digital content, and brand management. This is a hands-on leadership role: the Director will both set direction and actively create, schedule, and publish content, while managing two part-time marketing and communications contractors. A major focus will be expanding creative educational content for our community and leading the refresh of NFED.org.
This position is full-time and remote.
Key Responsibilities
- Strategy and Brand: Design, implement, and evaluate the NFED’s annual communications plan, and serve as steward of our brand voice and visual identity.
- Creative and Educational Content: Lead the creation of engaging educational content for TikTok, YouTube, Instagram, LinkedIn, Facebook, and our website, making complex medical and research information accessible to all.
- Content Calendar: Own the content calendar and write, schedule, and publish social media posts, e-newsletters, and email campaigns.
- Website Leadership: Lead the NFED.org website refresh, from staff input and vendor selection to launch and ongoing updates.
- Storytelling and Community: Elevate the stories of individuals and families affected by ectodermal dysplasias, and foster a welcoming, responsive online community.
- Collaboration: Partner with our team to bring creative messaging and design to appeals, sponsorships, and impact reports, and explore responsible ways to use AI tools to enhance our work.
Who We’re Looking For:
- Four or more years of experience in communications, marketing, or digital content, with a portfolio of creative work
- Excellent writing and storytelling skills, especially in making medical or scientific information accessible
- Hands-on experience with social media scheduling, email marketing, and short-form video
- Experience managing contractors, vendors, or staff
- Familiarity with AI tools and curiosity about using them responsibly
- Experience with website redesign, SEO, GEO, or accessibility standards
- A creative, organized, and collaborative spirit that thrives in a remote workplace
- A genuine affinity for the NFED’s mission and a heart for serving our community
Why Join Us?
At the NFED, we’re more than a team. We’re a community united by a shared purpose. The Director of Communications will have a seat at the senior leadership table, a direct voice in shaping our future, and the chance to lead high-visibility projects like our website refresh and a growing educational content library. We offer professional development support and connections with leaders across the rare disease community through our national and international partnerships.
Ready to Apply?
Submit your resume or CV, cover letter, and three references below by November 2, 2026.
The NFED is an equal opportunity employer committed to diversity and inclusion. We especially encourage applications from individuals with lived experience of rare diseases.
Application Deadline: November 2, 2026
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.
NFED Employment Application
NFED Employment Application