Rare Disease Day 2024
29Feb
Today is a very special day, Rare Disease Day! A day that gives us the opportunity to shine a spotlight on patients and families living with rare conditions. It is also a special moment in time to raise awareness about research study conducted for boys with XLHED, a rare genetic disease that can affect the sweat glands, respiration, skin, hair, teeth, and may significantly impacts quality of life. A clinical trial, Edelife is underway to evaluate a potential treatment for the most common form of ectodermal dysplasia (XLHED).
Pregnant women in any country who are XLHED carriers and pregnant with a boy may be able to join.
Recruitment is ongoing !
https://edelifeclinicaltrial.com/
