2009 Romberg Connection Survey of Parry-Romberg Syndrome symptoms, and related issues with the disease.  Many thanks to the Romberg Connection members for their contributions of information.  We also extend our appreciation to the Romberg Connection moderators, Marilyn & Gerri Neal, for their commitment and time creating and compiling the survey.

The Childhood Arthritis and Rheumatology Research Alliance (CARRA) is a North American organization of pediatric rheumatologists who have joined together to answer critical clinical research questions. We are committed to advancing the health and quality of life of children living with rheumatic disease and arthritis. We have developed an ambitious scientific agenda that identifies critical clinical science needs and opportunities in our field. CARRA has created a multi-center network of pediatric rheumatology research centers across North America that is working together on investigations. Such collaboration increases the number of children who participate in studies and reduces the research time it takes to reach valuable conclusions.