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
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
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
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
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
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 -
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
