The Romberg's Connection is an international support group made up of over 800 individuals and families whose lives are affected by Parry Romberg Syndrome. We have come together to offer our strength, courage, support and friendship to one another.

On May 23, 2013 we joined the Invitae Patient Insights Network which “is a genetic information company whose mission is to bring genetic information into mainstream medical practice to improve the quality of healthcare for billions of people. We believe that patients own their data and have the right to share it in a manner that protects their privacy.”

To learn more click here.

To register with the Invitae Patient Insights Network, please go to Parry Romberg.Connect Patient Registry .

• National Organization of Rare Disorders - Parry Romberg Syndrome
• National Organization of Rare Disorders
• Orphanet - The portal for rare diseases and orphan drugs
• Orphanet: Parry Rombergs - Progressive Hemifacial Atrophy, Other websites
• The Parry Romberg Foundation
• "The mission of The Parry Romberg Foundation is to prevail over this rare and life altering syndrome and restore the lives of those affected."
• Other Resource Sites:
• The Hank Chronicles
• Parry Romberg Syndrome Information
• Medical Searches
• Romberg's Connection News
• Frequently Asked Questions about The Romberg's Connection
• Photo Album
• Our Stories
• Parent's Page Share your experiences
• Romberg's Connection Meetings
• Where Our Members Are Located
• Our Own Romberg's Survey Results
• Our Romberg's 2000 Survey Results
• Our Romberg's 2003 Survey Results  
• The Romberg's Connection 2009 Survey Results
• 2009 Survey Results downloadable(Requires Adobe Reader)
• Article As Published In "Practical Neurology" June 2006(Requires Adobe Reader)
• German guidelines for the diagnosis and therapy of localized scleroderma

  Summary

  Localized scleroderma designates a heterogeneous group of sclerotic skin disorders. Depending on the subtype, severity, and site affected, adjacent structures such as adipose tissue, muscles, joints, and bones may be involved. This is an update of the existing German AWMF (Association of the Scientific Medical Societies in Germany) guidelines (classification: S2k). These guidelines provide an overview of the definition, epidemiology, classification, pathogenesis, laboratory workup, histopathology, clinical scoring systems, as well as imaging and device-based workup of localized scleroderma. Moreover, consensus-based recommendations are given on the management of localized scleroderma depending on its clinical subtype. Treatment recommendations are presented in a therapeutic algorithm. No financial support was given by any pharmaceutical company. The guidelines are valid until July 2019.

• Successful ultraviolet A1 phototherapy in the treatment of localized scleroderma: a retrospective and prospective study.
• What is Parry Romberg Syndrome? (Requires Adobe Reader)
• This article was written by Sally VanRaemdonck and published in the December 2007 issue of InFocus, a newsletter for AARDA (American Autoimmune and Related Diseases Association) and is reproduced here with permission.
• Pediatric Articles
• Evaluation of methotrexate and corticosteroids(Requires Adobe Reader)
• Juvenile localized scleroderma: clinical and epidemiological features in 750 children. An international study(Requires Adobe Reader)
• Juvenile-onset localized scleroderma activity detection by infrared thermography(Requires Adobe Reader)
• Juvenile Scleroderma - Scleroderma Foundation
• Linear Scleroderma en coup de sabre With Associated Neurologic Abnormalities
• Scleroderma en Coup de Sabre and Parry Romberg Syndrome
• Sonographic evaluation of pediatric localized scleroderma: preliminary disease assessment measures
• Articles by Dr. Thomas J. A. Lehman, MD. (Chief, Division of Pediatric Rheumatology, Hospital for Special Surgery Professor of Clinical Pediatrics, Weill Cornell Medical School)
• Scleroderma en Coup de Sabre and Parry Romberg Syndrome.
• Why do I look different?
• A Presentation on Grief & Loss Relating to Parry Romberg Syndrome
• Romberg's Connection Surgery Guestbook -- A place to "post" your thoughts, questions & concerns regarding reconstructive surgery.
• Other Craniofacial Disorders
• Resources

Our visitors since January 1, 2024.

Last Update January 26, 2024