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
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
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
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
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
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