Welcome to Opitznet.org

At this site you will find family-friendly information and links for the Opitz G/BBB and FG syndromes.

As more research is made regarding two of the syndromes described by Dr. John M. Opitz: G/BBB and FG, clinical geneticists are more able to diagnose individuals accurately. In the past, many individuals have received the diagnosis of G/BBB (Opitz-Frias, G Syndrome), when now it is believed that FG syndrome may be a more accurate diagnosis for many of our families.

This site was developed by Jan Wharton, mother of a child with FG syndrome, NOT by medical professionals  Nothing at this site is intended for diagnosis    Topics at this site  Opitz G/BBB Syndrome FG Syndrome  Opitz G/BBB Family Network  Conferences  Parent-to-Parent  Our G/BBB & FG KIDZ  In Memory  Helpful Resources Research    Other "Opitz" syndromes	Logo was designed for the Opitz G/BBB Family Network specifically and is used under license of Karen G. Frandsen.     P.O. Box 515, Grand Lake, CO 80447 USA  This Page is available in Español   and Italiano Si usted no habla Ingles, y quiere contactarse con alguien que hable Español o Portugues escriba a la siguiente direccion: pilartanoira@fibertel.com.ar para mas informacion  This is NOT the website of Dr. Opitz, who discovered the syndromes.
For the best information on FG syndrome - ANYWHERE - be sure to go to the FG Syndrome Family Alliance!  The FG Syndrome Family Alliance will have its next conference in Portland, Oregon July 2008.  All FG and G/BBB families are invited and encouraged to attend!	Does my child have G/BBB or FG syndrome? According to Dr. Opitz... If an affected individual has many of the manifestations of Opitz G/BBB syndrome, you may also want to investigate the possibility that he or she may have FG syndrome instead. This syndrome has many of the same manifestations, plus some. If the individual is a male, with a larger head, sensory integration challenges, low muscle tone, speech challenges, a thin upper lip, hair swirls or cowlicks, frequent ear or sinus infections, intense interests in one particular area, behavioral challenges you should consider reconsidering the diagnosis with your geneticist. IN the past it was believed an individual with FG syndrome always had mental retardation. This is not so. In fact people with FG syndrome may be gifted in one or more areas. In the past it was believed that individuals in order to have the diagnosis of Opitz G/BBB syndrome HAD to have a cleft of some sort. This belief is no longer considered necessary for that diagnosis. Dr. Opitz believes that as many as 50% of our G/BBB families may have been misdiagnosed. Please be sure to visit the FG Syndrome Family Alliance, for the most current and accurate information about FG syndrome - ANYWHERE!
What is the Opitz Family Network?	The Opitz Family Network is a parent-run support network for all individuals and families of children who have Opitz-G/BBB syndrome or FG syndrome. The Opitz Family Network was established in June of 1994 with the cooperation of Dr. John M. Opitz. We now have contact with over 300 families from Argentina, Australia, Brazil, Canada, Denmark, England, Holland, Hungary, Ireland, Israel, Italy, Luxemburg, Mexico, New Zealand, Northern Ireland, Norway, Scotland, Slovakia, Spain, Switzerland, Wales, and the United States. We are listed with many international, national, state and local agencies. Our goal is to offer support and encouragement among families by sharing successes and ideas about feeding, surgeries, therapies, education, and the other individual concerns we have for our special children!  We provide families with easy-to-read information about the syndromes, which they can then share with service providers. Parents can find the latest research, and items of interest about Opitz G/BBB or FG syndrome. There are two separate and very informative yahoogroups where families can communicate with each other on a daily basis! If you are a family member, a friend, or work with an individual who has Opitz G/BBB or FG syndrome - come join our network!
Come Meet Our Kidz!   Links to websites of our kidz who have the diagnosis of Opitz G/BBB and/or FG Syndrome    Click Here to Meet Timothy, our original G syndrome Baby - He's now 41 years old!	John M. Opitz, MD, with one of his special friends!   Ben of Colorado first had the diagnosis of Opitz G/BBB syndrome. Then as research allowed more differentiation, his clinical diagnosis was changed to FG Syndrome.
The Opitz G/BBB Syndrome Conference 2001 Denver,Colorado A Very Special THANKS to Dave Moutoux for shooting lots of great conference shots!	Josseph is our unOfficial Flag GUY! Kelly Snaps a Few Photos at our 2001 Conference in Denver!
In Loving Memory  Some special children who have passed away due to complications of Opitz Syndromes.	Santos and Brian These two adorable little guys became good friends at the Second International Opitz G/BBB Syndrome Conference! Since this conference, both boys have been re-diagnosed with the FG Syndrome!  Article about our Santos - in Argentina!
Opitz G/BBB Syndrome & FG Syndrome  Everything there is to know at this time	Parents' Description of Opitz G/BBB Syndrome -    Dr. Max Muenke, describing inheritance patterns of Opitz G/BBB syndrome Glossary of Terms associated with Opitz G/BBB and FG Syndromes United States National Library of Medicine OMIM Article on Opitz G/BBB syndrome Orphanet Article about FG syndrome, with reference to G/BBB Questions and Answers by Alexis Poss, Genetic Counselor Who is Dr. John M. Opitz? Opitz Syndrome by Vanderbilt Medical Center/ March of Dimes NORD Description of Opitz G/BBB Syndrome
Research All the latest	Current Research G/BBB syndrome Max Planck Institute for Molecular Genetics - X linked Opitz G/BBB Syndrome Andrea Ballabio, Scientific Director, Professor Medical Genetics, TIGEM, Naples Research Biologist, Germana Meroni at TIGEM, Naples  MID 1 Gene Research Mid 2 Gene Orphanet Article about FG syndrome, with reference to G/BBB
Join The Opitz Family Network  You'll be so glad you did!	How to Join the Opitz Family Network How to Subscribe to the Opitz G/BBB Yahoogroup - Be sure to go often to http://www.yahooGroups.com/group/opitzgbbb  after you have signed on to our Yahoo Group!
HELP US  Tell the world about Opitz G/BBB Syndrome! Translations needed!	How to Help the Opitz Family Network We are a 501(c)(3) Tax Exempt Organization. All Donations you make to our network are now tax-deductible!
Conferences Lots of Photos!	2001 Opitz G/BBB Syndrome Conference, Denver Colorado USA 1998 Our First Opitz Family Conference Salt Lake City, Utah, USA Dr. Opitz Conference followup Letter June 98   1998 Opitz Family Conference Photo Album and Picnic Photos The FG Syndrome Family Alliance -next conference in Portland, Oregon USA July 2008 All FG and G/BBB families are invited to attend! Highly Recommended for G/BBB as they will focus on the same challenges our families face!
Come meet Our Opitz Kidz! Some people with G/BBB and FG syndromes You Won't believe how cute they are!	From the Heart - Parents' Own Stories About Our Kidz 3 Colorado FG Families went to the zoo together. Check it out! Meet some of OUR KIDZ - Links to their webpages In Loving Memory   Some special children who have passed away due to complications of the Opitz G/BBB and FG Syndromes
Parent-to- Parent  Sharing What We're Learning a	Opitz G/BBB Syndrome Suggestions - what you need to know when you first get the diagnosis - a short compilation from the "Pros" - the parents  It Works for Us! - Lots and lots of Real Life Practical Ideas  A Dad's Perspective - article written by Dave Fleming  Inspirations - Stories, Poems and Pictures  Just Some Fun Stuff - For those Tough Days
Helpful Resources  Some of Our Favorite Links	Some Great Links - Recommended by Parents Free Translation site Our Favorite Doctors
Other "Opitz" Syndromes  Including FG syndrome, our "twin" syndrome!	Other "Opitz" syndromes - FG, C, SLO Canadian Opitz Family Network Opitz G/BBB relationship with FG syndrome  Orphanet Article about FG syndrome, with reference to G/BBB
	If you have questions about Opitz G/BBB syndrome, or the ways we have helped our children, please don't hesitate to email us. We answer each of our emails personally. We are also happy to send materials to families and service providers upon request. If you would like to talk to a parent, just give us a call and we can try to match you with a family who has similar challenges, or who lives in your region of the world! 970-627-8935 or 970-627-8818 fax
	Si usted no habla Ingles, y quiere contactarse con alguien que hable Español o Portugues escriba a la siguiente direccion: pilartanoira@fibertel.com.ar para mas informacion
Special Thanks to Karen Frandsen for designing our logo! Used under license.
Copyright 2004 by the Opitz G/BBB Family Network, Inc , a 501c(3) nonprofit organization. The Opitznet Website is developed by Jan Wharton, mother of a child with FG syndrome and president Opitz G/BBB Family Network. Updated January 20, 2008 Nothing on this site is intended for diagnosis.  This is NOT the site of John M. Opitz, MD.