Anyone who is dealing with Xlhed in their family is keen on knowing what is being done about this genetic disorder. There is a good number of research and studies being conducted to help prevent this. All indications are that a method of prevention is going to have to take place in the embryo stages.
There are various organizations and associations that are dedicated to the treatment and prevention of Xlhed. One of these is the National Foundation for Ectodermal Dysplasias. As recently as of July 2017, NFED produced some research updates that holds some promising news.
This involves a drug called ER-004. When it first came into existence, it was called ED1200. Originally experimentations with this drug were being conducted by a company called Edimer Pharmaceuticals. Now, this is being carried on by a company ins Switzerland.
While this is new, it means that there are still miles to go before success is reached. The focus is being placed on the treatment of babies in utero. This is basically a result of the original research that indicated that in order for Xlhed to be treated, it would have to be during the growing phases of the embryo.
Basically, ER004 is a drug that is in a synthetic form to replace the protein that is missing that leads to the condition of Xlhed. What makes this so critically important is that currently, it is the only drug that is being developed for eradicating this abnormality of the affected genes.
Originally, there had been some progress since then and it was determined that the drug is tolerated by the patients. It fell short by not being able to rectify the symptoms that come with Xlhed in the newborn boys that had been part of the study. The study was then terminated after this but now new hope is on the horizon with the Switzerland company being willing to continue it.