Welcome to The Romberg's Connection

The Romberg's Connection is an international support group made up of over 550 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.

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The Romberg's Connection

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
Other Resource Sites:
Brothers and Sisters Through PRS
Champions for Hope
Helping Hands for Hank
The Hank Chronicles
Kealy's Journey with Linear Scleroderma from Mom's Perspective
Parry-Romberg Syndrome Resource, Inc.
Parry Romberg Syndrome Information
Medical Searches
Romberg's Connection News
Frequently Asked Questions about the Romberg's Connection
Photo Album(New Photos February, 2013)
Our Stories
Parent's Page Share your experiences
Romberg's Connection Meetings(New Meeting August 2012)
Where Our Members Are Located(Updated October 8, 2011)
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)
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)
Scleroderma en Coup de Sabre and Parry Romberg Syndrome
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

The Romberg's Connection Guestbook
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Guestbook Archives

2012
2011
2010
2009
2008
2007
2006
2005

2004
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1998

We've had (Counter Image Missing) visitors since January 1, 2012.

Past Vistors

2012 -5,157
2011 -6,859
2010 -5,542
2009 -7,410
2008 -5,582
2007 -3,710
2006 -7,127

2005 - 13,984
2004 -9,883
2003 -9,734
2002 - 31,280
2000 - 15,987
1999 - 16,825
1998 -7,667

For more information about the Romberg's Connection, please e-mail us at rombergs@hotmail.com.

For questions or comments about this website, please contact Gerri Neal.

Disclaimer:Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for a consultation with one's personal physician. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.

As a support group, The Romberg's Connection is unable to offer medical advice to anyone, however, we are presently working on a listing of doctors with Rombergs experience.