This web site is a compilation of information, discussions, stories, events and pictures of the people that are touched by a very rare condition called Wolf-Hirschhorn Syndrome. Detailed information on the condition can be found by going to the About Wolf-Hirschhorn Syndrome page on this site. Wolf-Hirschhorn Syndrome comes in varying levels of severity depending on the size and location of the chromosome deletion.
For most parents and families looking to find information on Wolf-Hirschhorn Syndrome, this site provides a real insight into the children, the families, the challenges and the prognosis of this rare condition. A seemingly similar story hits all of us upon hearing of the diagnosis; a scary and dreadful condition with a likely negative outcome. However, the reality of the situation is that this syndrome effects all of us in ways that we never realized. The results of the diagnosis is not as grave as doctors and geneticists tell us. In fact, the results are far from the information that we are given. The truth is not in chromosome abnormality books or in the book of rare diseases. The truth is here, on this site. It’s been created for sharing and for believing that what we’re faced with brings more to our lives than what we are told.
wolfhirschhorn.org pulls it all together and unveils the truth about a rare syndrome that has become a part of our lives. Read Our Stories to learn more.