Pamela has faced vision loss, joint replacements, and countless medical challenges, but she’s never stopped dancing. It took her 40 years and research into her birth family to learn her medical history and diagnosis. Read how this inspiring grandmother keeps moving forward and encourages others living with incontinentia pigmenti to do the same.
Knowing I Had Incontinentia Pigmenti Earlier Might Have Changed My Life
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.
Dermatology Grand Rounds Highlight Power of Patient Stories
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.
Conference Advances Research and Treatment for Incontinentia Pigmenti
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.
Research Conference Aims to Find Answers for Incontinentia Pigmenti
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.
Prevalence Rates: How Many People are Affected by 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.
Leading the World in Research for Ectodermal Dysplasias
The NFED is pioneering innovative research on several fronts to find answers to some of our many unanswered questions. Learn about efforts to establish prevalence rates, to develop treatment protocols for wound healing in the p63 syndromes, to establish best practices for eye treatment protocols for incontinentia pigmenti and more.
Top 10 Syndromes that Affect NFED Families
Learn which types of ectodermal dysplasia are the most common among NFED families. Update your profile with the type that affects your family. You and your love ones count!