In May 1999, a mailing list was created to help families of children or adults who have been diagnosed with osteopetrosis. We hope to share our experiences in dealing with osteopetrosis and its effects on our children, including bone marrow transplants, alternative treatments and vision loss. If you would like to join this list, send me an email and I will be happy to give you the details.

If your family is affected by this disease, you may wish to review information regarding the Osteopetrosis Support Trust - a voluntary not-for-profit organization in the United Kingdom dedicated to supporting families with children who have Osteopetrosis.

Take some time to browse http://www.osteopetrosis.org/   It is a site dedicated completely to osteopetrosis.  It includes articles, links and a guestbook with many entries from individuals dealing with the disease.