http://health.groups.yahoo.com/group/BARDVictoria/ BECKWITH-WIEDEMANN AND RELATED DISORDERS Sun, 29 Jan 2006 02:03:20 GMT Brenda Fearon http://health.groups.yahoo.com/group/BARDVictoria/message/88 http://health.groups.yahoo.com/group/BARDVictoria/message/88 Dear members and readers, Please note that this site and the service, BARD Victoria, will be closing as of 28th February 2006. There are still some information Mon, 07 Nov 2005 07:03:34 GMT Brenda Fearon http://health.groups.yahoo.com/group/BARDVictoria/message/87 http://health.groups.yahoo.com/group/BARDVictoria/message/87 Information at this site is provided for informational purposes only and cannot replace the advice of a medical practitioner. Please consult your physician for Wed, 07 Sep 2005 01:43:41 GMT Brenda Fearon http://health.groups.yahoo.com/group/BARDVictoria/message/84 http://health.groups.yahoo.com/group/BARDVictoria/message/84 Dear readers, Some of you may be interested in this article which appeared in Melbourne's "Age" newspaper yesterday. Fri, 25 Feb 2005 02:52:16 GMT Brenda Fearon http://health.groups.yahoo.com/group/BARDVictoria/message/78 http://health.groups.yahoo.com/group/BARDVictoria/message/78 Dear readers, Two additional publications are being added to the BWS information pack: A booklet: Helping You and Your Family - Self-Help Strategies for Wed, 10 Nov 2004 10:30:22 GMT Brenda Fearon http://health.groups.yahoo.com/group/BARDVictoria/message/75 http://health.groups.yahoo.com/group/BARDVictoria/message/75 BECKWITH-WIEDEMANN INFORMATION PACK Beckwith ?Wiedemann information packs are now available and include the following items: Genetic Information Sheet ? Sun, 10 Oct 2004 04:32:46 GMT B.A.R.D. Victoria http://health.groups.yahoo.com/group/BARDVictoria/message/73 http://health.groups.yahoo.com/group/BARDVictoria/message/73 B.A.R.D. VICTORIA TOPIC PAPER Interactive E-mail Forums / ?Mailing Lists? Internet interactive forums are a relatively new form of communication that can Fri, 18 Jun 2004 08:45:33 GMT bardvict http://health.groups.yahoo.com/group/BARDVictoria/message/69 http://health.groups.yahoo.com/group/BARDVictoria/message/69 I have added a link to the UK BWS support group which in turn contains a link to the Australia-wide BWS Support Group operated by Sydney parent,Caroline Hawes. Fri, 18 Jun 2004 07:36:48 GMT Brenda Fearon http://health.groups.yahoo.com/group/BARDVictoria/message/68 http://health.groups.yahoo.com/group/BARDVictoria/message/68 The Royal Children's Hospital in Melbourne has for some time now been engaged in research into the genetic issues surrounding Beckwith-Wiedemann Syndrome. Of Tue, 08 Jun 2004 07:38:26 GMT brendafearon http://health.groups.yahoo.com/group/BARDVictoria/message/66 http://health.groups.yahoo.com/group/BARDVictoria/message/66 Dear readers, I came across the link below and have put a notation into the "Links" section of this board. While the site is currently under construction it is Tue, 08 Jun 2004 07:19:53 GMT Brenda Fearon http://health.groups.yahoo.com/group/BARDVictoria/message/65 http://health.groups.yahoo.com/group/BARDVictoria/message/65 The entries at this site are provided as parent-to-parent information sharing and are intended for use in conjunction with a specialist medical provider. Wed, 19 May 2004 11:22:14 GMT B.A.R.D. Victoria http://health.groups.yahoo.com/group/BARDVictoria/message/60 http://health.groups.yahoo.com/group/BARDVictoria/message/60 Victorians may be interested in an entry in the most recent edition of NoticeBoard, Magazine of the Association for Children with a Disability; May 2004 Pg.17: Sat, 24 Apr 2004 12:09:40 GMT Brenda Fearon http://health.groups.yahoo.com/group/BARDVictoria/message/52 http://health.groups.yahoo.com/group/BARDVictoria/message/52 Question S.C.'s letter has been reprinted with permission. Her baby's name has been changed for privacy reasons. S.C. from NC in the USA writes the following: Mon, 01 Mar 2004 23:27:50 GMT bardvict http://health.groups.yahoo.com/group/BARDVictoria/message/46 http://health.groups.yahoo.com/group/BARDVictoria/message/46 Readers please note that the BWS Registry recommends the same screening protocol for Simpson-Golabi-Behmel Syndrome and for Isolated Hemihypertrophy as it does Fri, 27 Feb 2004 05:55:20 GMT bardvict http://health.groups.yahoo.com/group/BARDVictoria/message/44 http://health.groups.yahoo.com/group/BARDVictoria/message/44 The following protocol is available in the files section of this site in Microsoft Word format. Please subscribe to a Yahoo ID if you don't already have one