A new Yahoo group has been launched for families impacted by Chediak-Higashi Syndrome, a rare type of albinism that involves a bleeding disorder, immune system deficiencies and often progressive neurological deficits. The group is intended to help families impacted by CHS get to know one another, offer each other support and begin to advocate as a group for issues of common interest.
For now, the group will be moderated by Heather Kirkwood, Vice President of the Hermansky-Pudlak Syndrome Network. Although CHS is very rare, improved diagnostics and genetic testing is increasing the number of families diagnosed with this type of albinism. Research is also moving forward and identifying different types of CHS, some more severe than others. It is the HPS Network’s hope that by improving communication among these families, all will be better able to take advantage of scientific advances as they occur.