Romberg’s Connection

The Romberg’s Connection is an online support group dedicated to locating individuals and families whose lives are affected by Parry-Romberg syndrome and offering appropriate support. This is accomplished primarily through the mutual exchange of e-mail and regular mail correspondence, online networking through the Romberg’s Connection web site, and phone contacts. Parry-Romberg syndrome is a rare disorder characterized by slowly progressive wasting (atrophy) of the soft tissues of half of the face (hemifacial atrophy). Symptoms can include distinctive changes of the eyes and hair; and sometimes neurological abnormalities including episodes of uncontrolled electrical disturbances in the brain (seizures) and episodes of severe pain in tissues supplied by the fifth cranial nerve (trigeminal nerve) including the mouth, cheek, nose, and/or other facial tissues (trigeminal neuralgia). Established in 1997, the Romberg’s Connection has a membership of 500 members, worldwide. Many of the members have met in various locations throughout the world.