Are you or someone you know passionate about communications and marketing with a desire to make a real difference? Do you believe in the power of storytelling to inspire change? The National Foundation for Ectodermal Dysplasias is looking for a dynamic Communications Coordinator to help us expand our reach and amplify our mission. As a…
We’re Hiring, Development Coordinator!
Are you passionate about nonprofit development and looking to make a meaningful impact? The National Foundation for Ectodermal Dysplasias (NFED) is excited to announce a full-time, remote opening for a Development Coordinator! This is a dynamic role where you’ll support our Director of Development and Communications in executing strategic plans that drive our mission forward….
Complex Wounds in Ectodermal Dysplasias, TP63 Syndromes: November Conference in Philadelphia
We understand that wound healing presents a significant challenge for individuals with TP63 syndromes. This is why we are thrilled to share that the National Foundation for Ectodermal Dysplasias (NFED) will host a wound healing conference in just a few weeks, November 3-5. The collaborative Complex Wounds in Ectodermal Dysplasias Conference will occur at the…
Living with EEC: A Journey of Resilience, Art, and Advocacy
Greta Geiger knows living with a rare genetic condition can be a challenge. It also can shape your journey in unexpected and profound ways. A graduate from Millsaps College, where she received an art scholarship, Greta is both an award-winning sculptor and an aspiring genetic counselor pursuing a Masters in Medical Genetics and Genomics at…
NFED Recruiting TP63 Research Project Subjects
The National Foundation for Ectodermal Dysplasias (NFED) and researchers at East Carolina University (Dr. Maranke Koster & Shirley Parraga) are recruiting research subjects to participate in a new collaborative research project.
Mental Wellness & Individuals Affected by Ectodermal Dysplasias
Mental wellness sounds like a catchphrase because we hear about it more often in the news and in our social feeds. We may even discuss it with the people around us, but really, mental wellness is about how we take care of the mass of synapses, memories, and experiences in our heads, and that can carry a lot of weight sometimes. Living with, caretaking for, and supporting loved ones with a rare condition like ectodermal dysplasia can be a challenge. Learn about a new resource to help you with your mental wellness.
Volunteer Jordan: A Voice for Ectodermal Dysplasias
Jordan Kahn, a passionate advocate for the NFED, shares his inspiring story of supporting his daughters with hypohidrotic ectodermal dysplasia (HED). As a state lead for Maryland, he’s dedicated countless hours to raising awareness and advocating for legislation that impacts those with ectodermal dysplasias. Discover why Jordan is so committed to the NFED and how you can join him in making a difference.
Cholesteatoma Risk in AEC, EEC, and Goltz Syndrome
Learn more about the risks and recommendations related to cholesteatoma for individuals with AEC, EEC, and Goltz Syndrome through a recent study published in the International Journal of Pediatric Otorhinolaryngology.