The NFED is pleased to welcome Dr. Brad Amendt to our Scientific Advisory Council! With decades of research experience and a big heart for helping families, he’s bringing fresh ideas, cool regenerative therapies, and a passion for collaboration to push forward care and hope for our ectodermal dysplasias community.| National Foundation for Ectodermal Dysplasias
Rhonda spent decades not knowing that incontinentia pigmenti (IP) was the cause of her symptoms, losses, and struggles. Learning the truth brought clarity. Now, she shares her story to help others feel seen and empowered to live fully with IP.| National Foundation for Ectodermal Dysplasias
We’re excited to share that our Executive Director, Mary Fete, was featured on an episode of the Chief Influencer podcast! Mary discusses how leadership has shaped her work, and what our mission has done to make an impact.| National Foundation for Ectodermal Dysplasias
Curious how NFED families are helping doctors truly understand ectodermal dysplasias? Check out how twelve individuals stepped up to teach med students and doctors about ectodermal dysplasias at a recent Dermatology Grand Rounds. Their personal experiences provided a powerful way for the health care professionals to learn about these rare conditions so they can better diagnose and treat them.| National Foundation for Ectodermal Dysplasias
Nearly 300 attendees, including over 100 first-timers from five countries, gathered in Minneapolis for the 2025 NFED Family Conference. It was a heartwarming reunion filled with laughter, learning, advocacy, and unforgettable moments. Together, we took big steps forward, and left feeling inspired, supported, and filled with hope for what’s ahead.| National Foundation for Ectodermal Dysplasias
What if a decision made decades ago could change your baby’s future? That’s exactly what happened in Jack’s family. From grandpa’s sweat-free childhood to baby Jack’s groundbreaking treatment, this story connects generations, science, and heart. You’ll want to read how one family’s bravery is shaping the future of XLHED.| National Foundation for Ectodermal Dysplasias
Meet Kristin Matus-Kelso, our new Family and Community Programs Coordinator! With 20 years of personal experience in the ectodermal dysplasia community, Kristin is no stranger to the NFED.| National Foundation for Ectodermal Dysplasias
We empower and connect those touched by ectodermal dysplasias through education, support and research. Find resources, treatment and people like you.| National Foundation for Ectodermal Dysplasias
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.| National Foundation for Ectodermal Dysplasias
People often ask, "How many individuals are affected by ectodermal dysplasias?" It’s a challenging question to answer, since they are rare conditions. A team of NFED researchers now has an answer. Read to learn just how prevalent ectodermal dysplasias are and why these numbers are important.| National Foundation for Ectodermal Dysplasias
For years, NFED has championed research to find treatments for AEC syndrome’s painful skin erosions. Now, Prof. Caterina Missero’s lab offers new hope. Her team discovered a way to bypass the damaged protein causing skin breakdown. Potentially, it could transform care and improve life for those living with this rare condition.| National Foundation for Ectodermal Dysplasias
Bringing people together is what the National Foundation for Ectodermal Dysplasias does best—especially when advancing research. This is more than science; it’s about saving lives. Read what happened at our recent Complex Wound Healing Conference in Philadelphia.| National Foundation for Ectodermal Dysplasias
While a clinical diagnosis for ectodermal dysplasia is helpful in treating and understanding your condition, it’s also subjective. In many cases, genetic| National Foundation for Ectodermal Dysplasias
Lacy Light shares her family’s experience and hard won wisdom from their fight for their daughter's vision. This dedicated mom hopes to help other IP families with a new resource filled with tips and suggestions.| National Foundation for Ectodermal Dysplasias
Health insurance carriers generally pay benefits for medically necessary care and treatment related to the hair, skin and nails. Most, however,| National Foundation for Ectodermal Dysplasias
Finding a dentist to treat the complexities of ectodermal dysplasia can be difficult. We have created a network of Dental Treatment Centers throughout the| National Foundation for Ectodermal Dysplasias
Incontinentia pigmenti treatment is symptomatic and supportive. There is currently no cure for IP. For infants and children, parents should engage a team| National Foundation for Ectodermal Dysplasias
When characterizing IP, the only major criteria are four incontinentia pigmenti (IP) stages. Each stage is outlined below, but note that they can overlap.| National Foundation for Ectodermal Dysplasias
We invite you to join our growing ectodermal dysplasias community of 10,000 families plus care providers, volunteers and friends who want to support our| National Foundation for Ectodermal Dysplasias
When nine-year-old Keira and her mom, Tara, realized Maryland lawmakers hadn’t signed on to support the Ensuring Lasting Smiles Act (ELSA), they took action. With no meetings scheduled, they hit Capitol Hill, shared Keira’s powerful story, and made a big impact. Read about their bravery and how lawmakers took notice. Plus, find out creative ways you can advocate for ELSA.| National Foundation for Ectodermal Dysplasias
Co-chairs of the National Foundation for Ectodermal Dysplasias (NFED) Family Advocacy Committee give an update on the reintroduction of the Ensuring Lasting Smiles Act (ELSA) in Congress.| National Foundation for Ectodermal Dysplasias
Discover the incredible journey of XLHED research, where dedicated families and tireless efforts have led to life-changing breakthroughs. This inspiring story highlights how your participation can help shape the future of XLHED treatments. Don’t miss it!| National Foundation for Ectodermal Dysplasias
Curious how a baby can help change the future of a rare genetic condition? Read how Beth and Peter joined a groundbreaking clinical trial while Beth was still pregnant, giving their son, Matthew, early treatment for XLHED. It’s an emotional, uplifting story about science, family, and hope for generations to come.| National Foundation for Ectodermal Dysplasias
At the NFED, we recognize the urgent need for more research on rare conditions like incontinentia pigmenti (IP), which has received limited focus in the scientific community. We collaborated with Oregon Health Sciences University to host the NFED Incontinentia Pigmenti Conference: Translating Discovery to Therapy, which brought together researchers, doctors, and families to advance IP care.| National Foundation for Ectodermal Dysplasias
Meet Dr. Beau Meyer, a passionate pediatric dentist making a real difference for kids with ectodermal dysplasias! His dedication, creativity, and heart for his patients shine through in everything he does. Want to hear how he’s changing lives—and maybe even get inspired yourself? Don’t miss this volunteer spotlight!| National Foundation for Ectodermal Dysplasias
The National Foundation for Ectodermal Dysplasias (NFED) is thrilled to announce the addition of new leadership experts. Joining our Board of Directors, Patient Care Council, and Scientific Advisory Council, these four exceptional leaders will bring knowledge, experience and insights to advance the foundation's mission of supporting and serving individuals and families affected by ectodermal dysplasias.| National Foundation for Ectodermal Dysplasias
Long time National Foundation for Ectodermal Dysplasias (NFED) volunteer and pediatric dermatologist Dr. Elaine Siegfried said that mentoring the next| National Foundation for Ectodermal Dysplasias
What began as one mother’s determination to raise awareness for her son’s rare condition has now grown into a beloved community event. This year marks the final Sweat It Out 5K fundraiser for the NFED, and we're celebrating Jamie and her family's dedication to raising awareness for their son, Nicholas, who was born with XLHED.| National Foundation for Ectodermal Dysplasias
Dr. Schneider and his team of investigators have published their groundbreaking research results in a “Prenatal Correction of X-Linked Hypohidrotic Ectodermal Dysplasia.” We are thrilled to share with you key highlights from their research, what it means for our families affected by XLHED, and the next steps.| National Foundation for Ectodermal Dysplasias
There are many options for treating the numerous aspects of ectodermal dysplasia. We provide treatment information for many of the most common symptoms,| National Foundation for Ectodermal Dysplasias
Searching for a diagnosis can be frustrating. Often, the diagnosis is delayed because providers don’t realize that ectodermal dysplasia is the cause for| National Foundation for Ectodermal Dysplasias
Keeping your body cool when your sweat glands are missing or don't work can be a daily challenge. Our new library article explains all about sweat glands and how they work - or don't. Learn about hypohidrosis, the signs of overheating and ways to stay cool. Families weigh in on what's working for them.| National Foundation for Ectodermal Dysplasias
The NFED Family Conference is more than an event—it’s where connections thrive, and worries melt away. Like the Cheers theme song, it’s a place “where everybody knows your name.” Don't just take Kelley Atchison's word for it. Listen as NFED families share the impact the Conference had on them. Family Conference is a collection of stories of hope- we would love to see you there!| National Foundation for Ectodermal Dysplasias
Let's look back at joyous moments of 2024 brought to us by talented teenagers, a miracle baby, dedicated parents, a dad-daughter cycling team and others. From a clinical trial to personal milestones, their stories inspire and capture the heart of the NFED.| National Foundation for Ectodermal Dysplasias
Ally has never let ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome define her life. Thanks in part to the NFED community, music has helped Ally blossom into an inspiring young woman. She's now on track to become a music therapist, where she's sure to help and inspire countless others.| National Foundation for Ectodermal Dysplasias
Jacobi Sebock's killing it on the basketball court and getting attention from the likes of NBA player, Steph Curry. He excelled in both basketball and track his senior year, not letting his inability to sweat hold him back. Watch this All-State athlete dunk and find out the big dreams he has.| National Foundation for Ectodermal Dysplasias
Get the latest news from NFED! Read about advocacy, education, Family Conference updates, research, fundraisers, Stories of Hope and more.| National Foundation for Ectodermal Dysplasias
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.| National Foundation for Ectodermal Dysplasias
Now accepting applications for 2025! At the NFED, we recognize that cost can be a barrier to getting needed treatments and services associated with an| National Foundation for Ectodermal Dysplasias
A Step-by-Step Guide to Get Medical Benefits for Dental Care of Ectodermal Dysplasias Families affected by ectodermal dysplasias encounter a wide range of| National Foundation for Ectodermal Dysplasias
We have more comprehensive information on ectodermal dysplasias than any other organization. In this library, you can find detailed articles, guides,| National Foundation for Ectodermal Dysplasias
In recent years, we have learned that one gene is now the cause for three different types of ectodermal dysplasia. Learn more about the gene called WNT10A and how it manifests.| National Foundation for Ectodermal Dysplasias
The National Foundation for Ectodermal Dysplasias (NFED) has been collaborating for over a year with The Aspen Group to create a charitable referral connection for families. We are pleased to announce the formal launch of the Smile Bridge program to provide 15 identified patients free clinical dental care, to include implants, up to their age of 22.| National Foundation for Ectodermal Dysplasias
Nobody expects their child to be born with a rare genetic disorder. It can be challenging, frustrating and overwhelming. The NFED exists to assure| National Foundation for Ectodermal Dysplasias
By Jill Radley I found the NFED in 1992, upon the recommendation of my childhood dentist at the University of Minnesota. When I received the literature| National Foundation for Ectodermal Dysplasias
By John A. Stith, M.D. , Professor, Pediatric Otolaryngology Saint Louis University School of Medicine, NFED Board of Directors and Patient Care Council I| National Foundation for Ectodermal Dysplasias
By Sarah Tevis Poteet, D.D.S., P.A. NFED Board of Director member since 2003 & Patient Care Council member I grew up as part of the NFED family as an| National Foundation for Ectodermal Dysplasias
By Lea Richardson What for you may ask? We are pleased to announce that the NFED has been approved as an official Certifying Organization for The| National Foundation for Ectodermal Dysplasias
SYNONYMS Bloch-Sulzberger syndrome Bloch-Siemens incontinentia pigmenti Pigmented dermatosis Siemens-Bloch type Incontinentia pigmenti (IP) is an X-linked| National Foundation for Ectodermal Dysplasias
A nonprofit dedicated to one type of ectodermal dysplasia has closed its doors. We are honored to have worked with its founder to transfer their information and welcome their families. Explore our new, expanded section on incontinentia pigmenti.| National Foundation for Ectodermal Dysplasias
Eduardo shares his heart wrenching story to find help for his precious daughter, Arantxa. Born with incontinentia pigmenti in a country where doctors are not familiar with the condition, the sweet little girl faces extraordinary challenges. It's a story of a family fighting against all odds to save their baby and a father sharing his emotional journey.| National Foundation for Ectodermal Dysplasias
All of our advocacy, dedication and background work have finally paid off! We are excited to announce that the Ensuring Lasting Smiles Act (ELSA) was| National Foundation for Ectodermal Dysplasias
Maarten and Linus were the first two boys treated before they were born with an investigational medicine for X-linked hypohidrotic ectodermal dysplasia. The boys are now 7 years old. The long-term results are incredibly positive! Read how they and the four other boys who were treated are doing.| National Foundation for Ectodermal Dysplasias
Telling your story is the most powerful way you can advocate for the Ensuring Lasting Smiles Act (ELSA). We know firsthand that many legislators who have co-sponsored ELSA did so because they were moved by a family’s story. Follow our tips to write and perfect your story.| National Foundation for Ectodermal Dysplasias
People with certain types of ectodermal dysplasia are not able to sweat normally. Because of this inability to sweat, people with this symptom need to be| National Foundation for Ectodermal Dysplasias
4-Year-Old Wants to Bite Something With His New Dentures| National Foundation for Ectodermal Dysplasias
It's March Madness! Think playing college basketball is tough? Try doing it without sweat glands! Jacobi doesn’t just play—he’s excelling, despite having XLHED. From figuring out how to regulate his body temperature to throwing down jaw-dropping dunks, his journey is nothing short of inspiring. Learn what he has to say to the next generation of athletes with XLHED.| National Foundation for Ectodermal Dysplasias
Brooklynn’s journey with ectodermal dysplasia led to a life-changing smile transformation. Read how her new crowns boosted her confidence and function, and how her parents navigated challenges to give her the best care possible. This inspiring story is one of resilience, advocacy, and the power of a radiant smile.| National Foundation for Ectodermal Dysplasias
Each ectodermal dysplasia has its own combination of symptoms. Two or more of the key features must function abnormally to be defined as an ectodermal| National Foundation for Ectodermal Dysplasias
We are always looking for volunteers to help. YOU can make a difference today by joining our team of Helping Hands. The following opportunities are just a| National Foundation for Ectodermal Dysplasias
Join Us for the NFED Family Conference! July 10-12, 2025 Registration Now Open! Register Today Become a Sponsor https://youtu.be/a5UXUeMm_JY The National| National Foundation for Ectodermal Dysplasias
At the National Foundation for Ectodermal Dysplasias (NFED), we understand the pressing need for research into rare disorders like incontinentia pigmenti (IP). This complex form of ectodermal dysplasia has garnered little attention in the research community, and we’re committed to changing that with the Incontinentia Pigmenti Conference: Translating Discovery to Therapy.| National Foundation for Ectodermal Dysplasias
If you want to help improve the lives of people affected by congenital anomalies, including ectodermal dysplasias, become an advocate for the Ensuring| National Foundation for Ectodermal Dysplasias
BE PART OF SOMETHING TRULY SPECIAL The 2024 Advocacy Day on Capitol Hill on July 9 was the finale of the three-day Stand Together Advocacy Conference. Our| National Foundation for Ectodermal Dysplasias
We have provided some materials and resources to help you advocate and prepare for meetings with your legislators. Advocating for ELSA? Let everyone know!| National Foundation for Ectodermal Dysplasias
NFED Members Participate in Advocacy Days| National Foundation for Ectodermal Dysplasias
Make Your Story Known For ELSA Dealing with a rare condition like ectodermal dysplasia can be very challenging, especially when it comes to navigating the| National Foundation for Ectodermal Dysplasias
It may seem like the Ensuring Lasting Smiles Act (ELSA) has stalled in the 118th Congress. However, we are taking a different approach. Find out what's happening with this critical legislation and what you can do to help.| National Foundation for Ectodermal Dysplasias
The new 119th United States Congress began on January 3. What does this mean for the Ensuring Lasting Smiles Act (ELSA)? Find out what has shifted, how we're moving forward and what you can do to help us get this important legislation passed.| National Foundation for Ectodermal Dysplasias
Ectodermal dysplasias are a diverse group of genetic disorders that involve defects of the hair, nails, teeth, skin and glands. Other parts of the body,| National Foundation for Ectodermal Dysplasias
Pediatric dermatologists are hard to find. Fortunately, the NFED has had an excellent one on our team in Dr. Elaine Siegfried. Read how about the impact she's made and why she thinks the NFED is different than other organizations.| National Foundation for Ectodermal Dysplasias
How to Use the Advocacy Tool Watch this tutorial video to learn how to fill out the advocacy tool above to contact your members of Congress about| National Foundation for Ectodermal Dysplasias
In the United States, health plans systematically and routinely deny claims and appeals for medically-necessary procedures related to congenital abnormalities or birth defects. This practice leaves families the burden of how to pay for their child’s treatment or procedures that are required to repair function — and to help kids enjoy happier, healthier childhoods. About| National Foundation for Ectodermal Dysplasias -
April 4th was an extraordinary day for families affected by ectodermal dysplasias and congenital anomalies! You could almost hear the cries of victory and feel the joy of our advocates, families and staff who watched the live stream of the House of Representatives where they announced that ELSA had passed. Read about the exciting vote and what's next for the bill in the U.S. Senate.| National Foundation for Ectodermal Dysplasias -
The biggest complaint we hear from families in the United States who are affected by ectodermal dysplasias is that their health insurance company or their employer-sponsored self-insured health plan has denied benefits for necessary medical care and treatment regarding teeth. Our mission is to put an end to this by advocating to Congress. Ensuring Lasting| National Foundation for Ectodermal Dysplasias -
NFED has been the driving force behind ectodermal dysplasias research for more than 30 years. Learn about our research, its impact, and how to participate.| National Foundation for Ectodermal Dysplasias
Synonyms Anhidrotic ectodermal dysplasia Christ-Siemens-Touraine syndrome Forms X-linked hypohidrotic ectodermal dysplasia (XLHED) Autosomal recessive| National Foundation for Ectodermal Dysplasias
Synonyms EEC syndrome There are three different forms of EEC: EEC type 1, 2 and 3. Only one family has been identified with EEC 1 and 2. The most common| National Foundation for Ectodermal Dysplasias
Synonyms AEC syndrome Hay Wells syndrome Rapp Hodgkin syndrome is now considered a part of the disorder spectrum. The clinical findings of| National Foundation for Ectodermal Dysplasias
Every donation allows the NFED to support more families and raise more awareness about the ectodermal dysplasia syndromes. Your tax-deductible| National Foundation for Ectodermal Dysplasias
For four days in October, 80 experts from around the world came together to chart a course for the future of ectodermal dysplasias and rare disease research. The ultimate goal was: “Translating Discovery to Therapy”. Find out how the International Ectodermal Dysplasias Research Conference will impact diagnosis and therapy development.| National Foundation for Ectodermal Dysplasias
The EspeRare Foundation and Pierre Fabre Medicament seek to develop the first treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED). They are| National Foundation for Ectodermal Dysplasias
The air felt electric on September 19th as 172 advocates marched to the steps of the United States Capitol Building in Washington D.C.., ready to advocate for the Ensuring Lasting Smiles Act (ELSA). Read about this amazing day and what's happening next for this important legislation.| National Foundation for Ectodermal Dysplasias
Our Staff Mary is our fearless leader who brings two decades of nursing and case management experience and her passion to make a difference. She oversees| National Foundation for Ectodermal Dysplasias
We are thrilled to announce that Greg Klimovitz has joined the National Foundation for Ectodermal Dysplasias (NFED) as our new Director of Development and Communications. With 20 years of experience in community development and executive leadership within nonprofit, interfaith and religious organizations, social enterprises, and youth programs, Greg brings a wealth of knowledge and a fresh perspective to our team.| National Foundation for Ectodermal Dysplasias
Women who are exploring prenatal treatment for their son affected by x-linked hypohidrotic ectodermal dysplasia (XLHED) now have an additional site to consider. The Edelife Clinical Trial has added a site at Cedars-Sinai Medical Center in Los Angeles (LA), California.| National Foundation for Ectodermal Dysplasias
Did you know that you could volunteer and the National Foundation for Ectodermal Dysplasias could get paid for your hours? Many companies across the U.S. are starting volunteer grant programs. Learn what you need to do.| National Foundation for Ectodermal Dysplasias
Volunteer Spotlight: Our Folders, Stuffers and Filers Oh My| National Foundation for Ectodermal Dysplasias
Why I Volunteered to Participate in the Edimer Research Trials| National Foundation for Ectodermal Dysplasias
What causes skin or corneal erosions in AEC or EEC syndrome? The NFED has been collaborating with Dr. Maranke Koster and her research lab to find that answer and ultimately develop new treatments. Read the latest update and what they are learning!| National Foundation for Ectodermal Dysplasias
Meet Shirley Parraga of the Wake Forest School of Medicine, Department of Dermatology and research assistant to Dr. Maranke Koster. Shirley’s journey with the National Foundation for Ectodermal Dysplasias (NFED) exemplifies a deep commitment to advancing research and providing hope for families affected by rare skin diseases.| National Foundation for Ectodermal Dysplasias
The Ensuring Lasting Smiles Act (ELSA) would require all private insurance group and individual health care plans to cover medically necessary services| National Foundation for Ectodermal Dysplasias
The NFED is Growing!| National Foundation for Ectodermal Dysplasias
