http://health.groups.yahoo.com/group/FEVRnet/ Familial Exudative Vitreoretinopathy Thu, 04 Jun 2009 18:41:26 GMT Jane Young MS http://health.groups.yahoo.com/group/FEVRnet/message/40 http://health.groups.yahoo.com/group/FEVRnet/message/40 I have received an E-mail from Dr. Tsilou, head of the National Institute of Health (NIH) Eye Clinic that the FEVR genetic clinical study is ending due to lack Fri, 03 Apr 2009 07:14:07 GMT gwkuma007 http://health.groups.yahoo.com/group/FEVRnet/message/39 http://health.groups.yahoo.com/group/FEVRnet/message/39 You are fortunate to be in HK where I'm quite sure you can find a good retinal specialist. Our daughter was diagnosed with FEVR while we were living in Fri, 03 Apr 2009 03:04:03 GMT Esther http://health.groups.yahoo.com/group/FEVRnet/message/38 http://health.groups.yahoo.com/group/FEVRnet/message/38 Thanks a lot Kerrie. Thanks for giving me the link to contact the other people who have the same disease. May God bless you and also the other kids who have Thu, 02 Apr 2009 09:21:54 GMT Darryl Beales http://health.groups.yahoo.com/group/FEVRnet/message/37 http://health.groups.yahoo.com/group/FEVRnet/message/37 Hi This disease is not related to FEVR. I found a group of people when I searched with the same disease http://www.makingcontact.org/index.php?ci=1738 I can Thu, 02 Apr 2009 03:44:04 GMT Esther http://health.groups.yahoo.com/group/FEVRnet/message/36 http://health.groups.yahoo.com/group/FEVRnet/message/36 Hi, my son is 4-year old who has just diagonised to have X-linked Juvenile Retinoschesis. I just want to know if it is same as FEVR? We are in Hong Kong and Tue, 02 Sep 2008 20:16:40 GMT pippa.milles http://health.groups.yahoo.com/group/FEVRnet/message/35 http://health.groups.yahoo.com/group/FEVRnet/message/35 Hi Luke & Manda! Thanks for your messages. We are another FEVR family in the UK. My son Arthur is nearly 3 years old and has (we think) the recessive form of Sun, 29 Jun 2008 16:06:16 GMT Jane Young MS http://health.groups.yahoo.com/group/FEVRnet/message/34 http://health.groups.yahoo.com/group/FEVRnet/message/34 Subject: Translators Wanted for fevr.net Website From: Jane Young, Host for http://fevr.net If anyone out there in cyberspace writes another language and would Sun, 22 Jun 2008 16:07:44 GMT Jane Young MS http://health.groups.yahoo.com/group/FEVRnet/message/33 http://health.groups.yahoo.com/group/FEVRnet/message/33 Note to all who are looking for place to find latest FEVR information. Go to website http://www.highbeam.com Here is link for FEVR search Wed, 18 Jun 2008 03:09:19 GMT chrreed http://health.groups.yahoo.com/group/FEVRnet/message/32 http://health.groups.yahoo.com/group/FEVRnet/message/32 Hi to All- It's Christina, mother to Hailey and Hannah who have FEVR, and I have a question for everyone. I have a genetic condition called Factor V Leiden Sun, 15 Jun 2008 00:53:59 GMT kelley242424 http://health.groups.yahoo.com/group/FEVRnet/message/31 http://health.groups.yahoo.com/group/FEVRnet/message/31 My daughter has had laser treatment in one eye for her FEVR. It was relatively painless for her and she has not needed any follow-up. ("Relative" to cryo Fri, 06 Jun 2008 13:09:35 GMT James Wilkins http://health.groups.yahoo.com/group/FEVRnet/message/30 http://health.groups.yahoo.com/group/FEVRnet/message/30 We have an 8 year old son who was diagnosed with FEVR at age 4. He had laser treatment around his 5th birthday to zap rogue blood vessels in his eyes (the Thu, 05 Jun 2008 12:30:10 GMT gwkuma007 http://health.groups.yahoo.com/group/FEVRnet/message/29 http://health.groups.yahoo.com/group/FEVRnet/message/29 Hi Kerrie, We have a daughter just a little younger than yours. She has FEVR in both eyes, but more noticeably in her left. At 1 y.o. she had a scleral buckle Thu, 05 Jun 2008 10:56:47 GMT darryl.beales http://health.groups.yahoo.com/group/FEVRnet/message/28 http://health.groups.yahoo.com/group/FEVRnet/message/28 Hi We are from Australia and our daughter Rose has fevr (most probably a ressesive form as there is no family history of anything similar in either family) Wed, 12 Mar 2008 17:19:25 GMT James Wilkins http://health.groups.yahoo.com/group/FEVRnet/message/27 http://health.groups.yahoo.com/group/FEVRnet/message/27 Promising news from a group seeking to provide relief from retinal diseases: http://news.bostonherald.com/news/regional/general/view.bg?articleid=1078909" Thu, 07 Feb 2008 21:06:56 GMT Jane Young MS http://health.groups.yahoo.com/group/FEVRnet/message/26 http://health.groups.yahoo.com/group/FEVRnet/message/26 I am passing on this letter I recieved. ... Hi Ms. Young, I came across your FEVR website and wanted to update you on our new Retina Institute at Childrens