Ever wonder what it actually feels like to overheat when you can’t sweat? We asked people in our community to share their experience in their own words. Plus, get the early warning signs every parent should know, especially if your little one can’t tell you they’re too hot yet.
NFED Family Conference Volunteers: 260 Hours of Heart
If you attended the Family Conference in Chesterfield, Missouri, chances are good you encountered a volunteer at every turn. Someone welcomed you warmly as they handed you your attendee bag, someone made sure your dental evaluation happened on time, and someone kept the crayons and water stocked in the hospitality room. Maybe they checked your…
The Smile that Makes Mia Shine
Mia has a big reason to smile! With help from the NFED, she got a denture that changed more than her smile. Her dad, Otis, knows what it’s like to grow up with ectodermal dysplasia and missing teeth. Read Mia’s sweet story and see why this little smile means so much to their family.
The NFED Launches Ectodermal Dysplasias Registry
The NFED is excited to launch the Ectodermal Dysplasias Registry! By joining, you can help researchers and doctors better understand these rare conditions, improve treatments, and shape the future of care. Every story shared adds to our knowledge and brings hope for all families affected by ectodermal dysplasias.
The Best Kind of Medicine: Inside NFED’s 45th Anniversary Family Conference
What happens when hundreds of people who truly understand life with ectodermal dysplasias come together? Hope grows. Friendships begin. Lives change. From happy tears and inspiring stories to exciting research and unforgettable moments, see why the 2026 NFED Family Conference reminded everyone that no one walks this journey alone.
What Do I Call My Type of Ectodermal Dysplasia?
Trying to understand all the names for all the types of ectodermal dysplasia can feel confusing. This blog breaks it down in a simple way. Learn why your syndrome may have different names, why genetic testing matters, and how knowing your gene or pathway could help with research, treatment options, and better care in the future.
Living with Hypohidrotic Ectodermal Dysplasia: A Journey of Resilience and Gratitude
Growing up on a dairy farm with HED wasn’t always easy. But, Kurtis loved rural life and had a supportive family who made accommodations to keep him cool. Living with differences guided him to a fulfilling career in helping at-risk youth and people with disabilities. Read how Kurtis found his purpose and community. Plus, he shares what he wishes for others living with HED.
Beyond Bubble Baths: Real Self-Care for the Ectodermal Dysplasias Community
Self-care is about more than bubble baths and beach vacations. This blog shares simple, real-life ways to reduce stress, prevent burnout, and care for yourself. Whether you’re living with ectodermal dysplasia or supporting someone who is or both, you’ll find helpful tips to feel more balanced, supported, and refreshed.