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alessio - 11/10/00 20:30:47 My Email:zzzgraal@tin.it Country: italy State: italy City: cagliari | Comments: I have baby: Emanuele,Who was diagnosed with Opitz Syndrome. Diagnosis based on features and conditions. I am very new on this diagnosed Opitz syndrome. I do need soem research or information on it please! Pleas email me. |
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Katsarou Litsa - 11/05/00 19:37:15 My Email:agkikas@uth.gr Country: GREECE City: VOLOS | Comments: Hello. My friends boy is 6 yo and has Opitz syndrome. I would like to know about the existence of any Medical Care Center for these children in Europe or in any country near Greece. Thank you in advance. |
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Sarah - 11/03/00 17:53:47 My Email:schyleen69@hotmail.com Country: United States State: Nebraska City: Kearney | Comments: I have a friend that doesn't understand a lot about the syndrome and I would appreciate any help. I haven't been able to find much. Thank you and God bless. |
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Marcy Smith - 10/30/00 22:08:17 Country: United States State: OHIO City: Sidney | Comments: Hi I have a nine tear old cousin who has Opits. He has had many health problems but is doing great now. I am a teacher's aide in a handicapped classroom at a public high school and I am very interested in learning about diabilities and disorders. Thank Yo ! |
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Cherilee Burton - 10/11/00 16:47:48 My Email:cheri.burton@tenethealth.com Country: US State: North Carolina City: Hickory | Comments: My infant son was recently diagnosed with Opitz syndrome. My mother actually found your website and we have all found the information quite helpful. Thank you. |
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debi gumeman - 09/22/00 11:50:46 My Email:debi1686@aol.com Country: united states State: pennsylvania City: huntingdon valley | Comments: please forward any and all information regarding this condition |
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Jessica - 08/03/00 23:49:35 My Email:KennysGirl125@aol.com Country: United States State: Michigan City: Burton | Comments: I have a wonderful 19 month old son, Kenny Jr. Who was recenlty diagnosed with Opitz Syndrome. (No Blood work yet performed) Diagnosis based on features and conditions. He was born with excess water on the brain, that vanished by 3 months. Cleft lip/palat , Agenesis Corpus Callosum , Hypernatremic (High Sodium), Hole in his heart- that closed on its own, a umbilical hernia - healed on its own , imperforate anus , Cerebral palsy due to a 23 minute seizure at 3 months. I am very new on this diagnosed Opitz yndrome. I do need soem research or information on it please! He does not sit crawl or walk, due to the stiffining of his muscles. and has constant constipation. And everyhting scares him. If you can relate or have a child with these same conditions Pleas email me. |
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TRACEY BUZZO - 05/29/00 00:16:40 My Email:BUZMANIA@PRODIGY.NET Country: USA State: VIRGINIA City: ROANOKE | Comments: |
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Ash Hind - 05/22/00 01:28:54 My Email:ahind@casey.vic.gov.au Country: Australia State: Vic. City: Melbourne | Comments: Trying to find families in Australia with children with Opitz syndrome on behalf of my cousin in Geelong. Please e-mail me at the address supplied, or phone (BH est) 03 9705-5325. |
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Joyce Orr - 05/14/00 15:10:37 My Email:Orrbit2@Juno.com Country: USA State: Utah City: Syracuse | Comments: I am a Head Start Teacher who is looking for as much information as I can get on Opitz Trigonocephaly Syndrom, as next fall I will be working with an Opits family. |
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betty evans - 04/10/00 13:44:06 My Email:bootsijak@aol.com Country: usa State: alabama City: mobile | Comments: 13 month old grandson tentatively diagnosed with opitz. |
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Nancy K. Henseler-Bieze - 03/23/00 03:28:48 Country: USA State: WI City: LaCrosse | Comments: My son Theo, who has Opitz C, is now 12 years old. Anyone having information regarding development thru the teen years, please let me know! We continue to have GI problems, primarily with constipation. He had his G-tube taken out several months ago and ow eats all food by mouth!! |
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Connie Vigil - 03/15/00 01:01:45 My Email:connie@kenyonlawfirm.com Country: us State: wa City: Issaquah | Comments: My son might have Opitz C Syndrome. Can you reccommend any books on it? |
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Amanda L. Marek - 02/29/00 18:37:33 My Email:almarek@hotmail.com Country: USA State: MA City: Boston | Comments: As an occupational therapist with a child with Opitz Trigonocephaly on my caseload, I found your website full of information. Most importantly, I found a continuous theme of love and compassion for these children and their families truly warming and insp ring. Thank you. |
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Faith Rockwood - 02/25/00 14:04:28 My Email:frockwood@servicenetinc.org Country: USA State: MASS City: Greenfield | Comments: I work for an early intervention program for children 0-3 years of age with or at risk of developing special needs. We have a child that has a diagnosis of Opitz syndrome. I am looking for information on this syndrome. |
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Don Brown - 02/24/00 14:12:44 My Email:dbjdpb1@swbell.net Country: USA State: Texas City: North Richland Hills | Comments: Hello, I am the father of a 16 year old lovely young lady named Catie(Catherine)Brown. Catie was diagnosed in approx. 1983-84 with C Syndrome at Bowman Gray in Winston Salem, NC (I'm orig. fm Greensboro). She is a doll and is doing well. She is in Spec Ed but lives a very full and happy life. She has resided with me and her StepMom since 1991 and has always been a special light in my life. I would be more than willing to chat about experiences with anyone that is interested. See ya. |
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Cora Villarreal - 02/14/00 02:25:36 Country: us State: nc City: charlotte | Comments: |
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karen greeninger - 01/27/00 19:42:56 My Email:kgreeninge@aol.com Country: usa State: Minnesota City: Eden Prairie | Comments: I have a 5 month old who was diagnosed with Opitz C last month. Her condition looks so hopeless yet when I read the comments from others here, I am more hopeful. Would like to hear from others. |
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candi heslop/ cody - 01/24/00 21:10:55 My Email:cheslop1@msn.com Country: usa State: utah City: roy | Comments: We just wanted to let everyone know our new email address. and we hope everything is great with you all. love chris candi cody |
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Tony Mangan - 11/16/99 22:21:29 My Email:tmangan@netcon.net.au Country: Australia State: Victoria City: Town - Heathcote | Comments: Thanks - Our daughter is perhaps OTS - aged 14 mths - confirmation pending. Your information is very helpful. Tony. |
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Donna Moore - 10/27/99 17:35:00 My URL:http://www.hotmail.com My Email:donnamoore81@hotmail.com Country: USA State: Maryland City: Baltimore | Comments: Your website has helped me greatly. My son was diagnosed about 5 years ago with opitz; to which I did not know anything about. Thank you dearly. May God bless you and keep you safe always. |
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Andrea Deel Lanning - 10/26/99 17:49:34 Country: usa State: NC City: Welcome | Comments: My son Henry Deel was diagnosed with Opitz C Trigonocephaly 10 years ago. |
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VAZQUEZ, LETICIA - 10/13/99 02:20:02 My Email:VVAZ498016@AOL.COM Country: USA State: CA City: PORT HUENEME | Comments: SHE IS 3 YEARS. WE ARE LOOKING FOR A DOCTOR IN OUR AREA, WHO MAY KNOW ALITTLE ABOUT HER. |
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Bob & Karen Stott - 09/27/99 22:12:55 My Email:zcps@ici.net Country: USA State: Massachusetts City: Plymouth | Comments: The website provided some very useful information. Our 4-year-old son is suspected of having Opitz-C Syndrome. He has many of the classic features, developmental delay, and feeding problems. He will have a MRI of his brain next week. Thanks for the info |
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Bob & Karen Stott - 09/27/99 21:58:48 My Email:zcps@ici.net Country: USA State: Massachusetts City: Plymouth | Comments: This web page has been exremely helpful in providing additional information about the Opitz Syndrome. |
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Kevin McGlynn - 07/27/99 01:12:12 My Email:ksmcglyn@raaf.defence.gov.au Country: Australia State: Western Australia City: Bullsbrook | Comments: I'm the father of a little girl by the name of Chantelle. Chantelle died on the 19th of November 1998 from a massive seizure. Chantelle will be turning 5 on the 6th of August 1999. Happy Birthday my darling........ Love Mum, Dad and Keegan. xoxoxoxoxoxoxoxoxo . |
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Rob and Joanne Wittman - 07/25/99 23:19:10 My Email:robj68@earthlink.net Country: United States State: Pennsylvania City: Ambridge | Comments: We have a two year old son Robert diagnosed with Opitz C since he was three months old. He is involved in an early intervention program and has a myriad of doctor's appointments and hospitalizations. He is one of our two wonderful children and is a true y inspirational child (sorry, but we are a bit proud). It is great to find a resource like this and we would appreciate having contact with other families of chilren with Opitz C. |
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Rob and Joanne Wittman - 07/25/99 22:59:07 My Email:robj68@earthlink.net Country: United States State: Pennsylvania City: Ambridge | Comments: |
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Cyndi Holloway - 07/13/99 19:18:28 My Email:skipit@clas.net Country: USA State: Missouri City: Jackson | Comments: I have a 4 year old with Opitz-C Syndrome. He is doing great !! He rides the bus to school and has class for 4 hours a day then comes home. He absolutely loves going to school. His name is Scott and he is still developmentally delayed in some areas but m kes progress daily. He is such a sweetheart, too !!! Anyone want to e-mail, feel free. |
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- 06/28/99 22:52:25 | Comments: |
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LYNN WALTERS - 06/04/99 22:16:10 My Email:EWAL809681@AOL.COM Country: USA State: TN City: CHATTANOOGA | Comments: I HAVE A 10YR OLD WHICH HAS BEEN DIAGNOSED WITH OPITZ C SINCE BIRTH AND THE DOCTOR WAS SPELLING IT WRONG..PLEASE CONTACT ME FOR MORE INFO ON OUR DAUGHTER CASIE SHE IS DOING VERY WELL, BUT IS PROFOUNDLY MENTALLY RETARDED AND IS HEALTHY... |
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Cody heslop - 05/23/99 04:50:20 My Email:mrspeed@networld.com Country: USA State: UTAH City: ROY | Comments: my son has opitz c syndrome, basically all of the characteristics, high arched pallet, multiple frenula, trigonecphly, hypotnia, agenis of corpus collosum, etc. Born on 11/1/95, started walking 1/1/99, goes to pre-school, through the early intervention p ogram, loves it. Can say a few words, mama, dada, buba, no, haay. He just basically captures your heart the first time you lay your eyes on him. He is our little, sweet angel. Little accomplishments are major steps for us. We went to the opitz conferen e last summer, and Dr. Opitz is our geneticist, truely a wonderful man. |
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cody heslop - 05/22/99 02:21:39 Country: USA State: Utah City: Roy | Comments: |
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Debra Boutilier - 05/19/99 20:47:01 My Email:boots.boutilier@ns.sympatico.ca Country: Canada City: Lower Sackville, Nova Scotia | Comments: Had a daughter born with Smith-Lemli-Opitz. She was with us for three years. Have been out of touch since then until my niece required information on this syndrome for a research paper. It's great see the advances made over the years about informatio know for these rare diseases. |
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BECKY - 05/11/99 02:57:22 Country: CANADA State: ONTARIO City: CHATHAM-KENT | Comments: I HAVE A 4 MONTH SON THAT HAS METOPIC SYNOSTOSIS. HE HAS TO UNDER GO SURGERY. I THINK ITS GREAT THAT OTHER PARENTS HAVE SOME INFORMATION TO GO ON. |
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Tracy Rizzo - 04/13/99 03:38:43 My Email:TracyRizzo@hotmail.com Country: USA State: CO City: Colorado Springs | Comments: Great site! |
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- 04/06/99 01:42:04 | Comments: |
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Nina Vincent - 04/01/99 17:41:45 My Email:nina@PHP.COM Country: USA State: CA City: San Jose | Comments: My daughter was just diagnosed 2 days ago with Opitz syndrome and I would like to be on a list serve if there is one. I too have a lot of difficulties with behavior problems from my 6 & a half year old daughter. |
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Diana McClure - 03/28/99 19:27:58 My Email:tmcclure@aeneas.net Country: USA State: Tennessee City: Palmersville | Comments: |
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Shoshawna Eads - 03/04/99 22:28:55 My Email:mr.blue@pepperlink.net Country: usa State: Alabama City: Winfield | Comments: I would like to hear from other people ,who deal day to day with children with Opitz-C. My 4 year old is having sleeping problems , as well as, growth problems. I am trying to decide on school or no school. I would like some feedback from others, who also deal with this. I would like to discuss different problems that each child has faced. Thank You |
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Rhonda Robillard - 02/06/99 14:23:59 My Email:Rhonrobi@aol.com Country: USA State: LA City: Baton Rouge | Comments: |
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Linda Baker - 02/03/99 01:43:22 My Email:design@studiobaker.com.au Country: Australia State: Victoria City: Melbourne | Comments: Hi, Have emailed before but would like to know if you have the email address for the Opitz C Downunder Group. Have lost their address and need to give it to a lady whose child has Opitz C. Thank you for your help. Kind Regards Linda (mum of Alex with unknown syndrome!!) |
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Marci Haynes - 02/01/99 21:29:51 My Email:bhinton@iea.com State: Washington City: Spokane, | Comments: I am looking for information on student behavior in regard to a student with Opitz C Syndrome. We have had a change in behavior of a student and I am wondering if the behavior is related to the disorder. Major change in the last 4 months. I do not kno any specific info. about Opitz C Syndrome. |
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Laurie Wagner - 01/24/99 21:07:35 My Email:bnlwagner@aol.com Country: U.S.A. State: Virginia City: Ashland | Comments: Could I please also get on you snail mail list also. This is a borrowed E-mail Address. My address is: Laurie Wagner 203-A Cottage Greene Drive Ashland VA 23005 |
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Cyndi Holloway - 01/09/99 06:34:11 | Comments: |
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L M - 12/21/98 03:43:26 My Email:booboo8899@aol.com Country: USA State: MD City: Hagerstown | Comments: I'm having serious behavior problems with my son and I'm looking for advise and information. Also I have had difficulty with the insurance company's paying for surgery because it is considered cosmetic. Can anyone help |
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paul & abina shillingsworth - 12/15/98 10:13:33 My Email:murandah@pnc.com.au Country: Australia State: NSW City: Blue Mountains | Comments: This page is great we live in Australia and have no support or information on Opitz C Syndrome which our baby boy Murrandah has (4months old). Please email us with any information and we need lots of support. Any one knowing how to contact Dr Opitz? |
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Steve Merrill - 12/03/98 02:56:42 My Email:TTBurnie@aol.com Country: USA State: CA City: Fresno | Comments: I teach Special Ed. and I have a female student in my class who may, according to a behavior specialist, have Opitz syndrome. She is severely developmentally delayed (age: 10 years; developmentally: 18-21 months). If you have any information on the correlation between Opitz and retardation, I'd appreciate knowing about it. Thanks so much! |
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Nancy K. Henseler-Bieze - 11/15/98 18:40:07 My Email:hense_nk@students.uwlax.edu Country: United State State: Wisconsin City: LaCrosse | Comments: :-O, This is excellant! |
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schipper - 11/12/98 20:56:54 My Email:bg@daxis.nl Country: Netherlands City: Capelle a/d IJssel | Comments: My son may have Opitz G Syndrome. l like reading more about Opitz syndrome at this site! |
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- 10/23/98 20:43:18 My Email:guido.de.schepper@village.uunet.be Country: Belgium City: Lier | Comments: At last we've found others who have children with the rare Opitz C-syndrome. We've a daughter with this syndrome and would like to come in contact with other parents. |
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- 10/23/98 20:40:28 My Email:guido.de.schepper@village.uunet.be Country: Belgium | Comments: |
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shawna eads - 10/19/98 21:10:02 My URL:http://mr.blue@pepperlink.net My Email:mr.blue@pepperlink.net Country: usa State: alabama City: winfield | Comments: I'am a mother of a four year old girl with opitz-C. She is also said to have rhetts syndrome. Please send me information, if you can tell me anything about the combination of these two syndromes. If you can tell me where Dr. Opitz is now that would help a so, I have lost contact with him since he moved from Montana. |
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miriam portelli - 09/30/98 20:45:39 My Email:niriam@dream.vol.net.mt Country: Malta State: Gozo City: Nadur | Comments: Hi, I want to make contact with the family of the Opitz Syndrome since I have a nephew and a niece who suffer from this syndrome |
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Ann Van Neygen - 09/25/98 21:53:23 My Email:vanneygena.cd@hogeschool-wvl.be Country: Belgium State: Europe City: Brugge | Comments: Congratulations with your Web-site. I have a daughter with the rare Opitz C syndrome and was very glad to read some information about it. I would like to come in contact with other parents. |
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Clare Carlsson - 09/22/98 03:24:57 My URL:http://www.yooralla.com.au My Email:vyoo@vicnet.edu.au Country: Australia State: Victoria City: Melbourne | Comments: Great to find you!! I am passing on the information I have found to one of our staff members who is helping a family with a recently diagnosed child with Opitz C Clare Carlsson Librarian |
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rhigh - 09/18/98 15:47:31 My Email:rhigh@mocom.net Country: usa State: mo City: springfield | Comments: |
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- 09/18/98 00:36:24 | Comments: I was number 1000 visiting your web site. Teacher of a child who has Opitz-C. Your web site was helpful. Thanks!! |
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- 09/18/98 00:33:33 | Comments: I was number 1000 visiting your web site. Teacher of a child who has Opitz-Frias Syndrome. Your web site was helpful. Thanks!! |
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AXEL BOHRING - 09/01/98 21:09:47 My Email:abohring@aol.com Country: Germany State: Schleswig-Holstein City: Eutin | Comments: Great web page! Big news - I have email now :-) |
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Toulkeridis - 08/22/98 15:58:53 My Email:i.v.e.@t-online.de Country: Germany State: Baden-Württemberg City: 71686 Remseck | Comments: |
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CARLOS MOLINA - 08/02/98 00:07:03 My Email:cmolina@intramed.net.ar Country: Republica Argentina State: Capital Federal City: Buenos Aires | Comments: We are glad to had see your page with the photografies of some of the visitors to the conference. We´re thinking to send you some photo of Nicolas. Warmly Carlos & Family |
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p j watson - 07/22/98 00:55:30 My Email:pwatson@iamerica.net Country: usa State: la City: folsom | Comments: |
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Charlotte Parscal - 07/09/98 07:07:38 My URL:http://www.impulse.net/~ccp/ My Email:ccp@impulse.net Country: USA State: California | Comments: Hi, I'm a Mom of a Opitz G syndrome kid and thought I'd check out your site. Great Job!! Char |
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Barb - 06/27/98 17:25:14 My Email:barbovon@aol.com Country: USA State: Indiana City: Valparaiso | Comments: I have an 11 year old son with Opitz C syndrome, and I think its great that there is a web page for such a rare syndrome. |
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JoLynne Sellars - 04/02/98 15:18:59 My Email:Jewelstar@webtv.net Country: USA State: Washington City: Lakewod | Comments: My Nephew has SLO and I am so glad that people take the time to make pages for us to read over the internet so that everyone can be educated about SLO. That is so great, Thanks.. |
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Rhonda Robillard - 03/22/98 02:31:34 My Email:RhonRobi Country: USA State: LA City: Baton Rouge | Comments: Your web page was very informative. |
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ANNA ELIZA FUHRICH - 03/20/98 18:37:31 My Email:afuhrich@graphus.com.br Country: Brazil State: Rio de Janeiro | Comments: |
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Sarah Robinson - 03/16/98 02:21:34 My Email:j.robinson@sk.sympatico.ca Country: Canada State: Saskatchewan City: Regina | Comments: I gave the wrong email address oops. I am working for the Early Intervention Program and am looking for contacts for one of the families that I work with a 2 year old boy with Opitz C. If you would like to share information please Email me. I know the amily is excited about this. |
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Sarah Robinson - 03/08/98 01:51:37 My Email:j.robinson@sympatico.ca Country: Canada State: Saskatchewan City: Regina | Comments: I work for the Early Intervention Program and am looking for contacts for a family. Let me now if interested in contacting. Excellent information ! |
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Jaap en Wilma Molema - 03/04/98 19:27:59 My Email:jmolema@worldonline.nl Country: Holland City: Zwolle | Comments: It's great to have an 'own' homepage for Opitz-C! |
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Chris Lemoine - 03/03/98 16:33:15 My Email:is-cl@womans.com Country: U.S. State: Louisiana City: Baton Rouge | Comments: Your site rocks! |
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Paul Cass - 03/03/98 16:11:46 My Email:Paul Cass @bedison.com Country: US State: Mass City: Sudbury | Comments: SLC |