http://health.groups.yahoo.com/group/butterflychildren/ Butterfly Children - Raising Awareness of Epidermolysis Bullosa (EB) Sun, 05 Jul 2009 11:44:35 GMT http://health.groups.yahoo.com/group/butterflychildren/message/3813 http://health.groups.yahoo.com/group/butterflychildren/message/3813 Reminder from: butterflychildren Yahoo! Group http://groups.yahoo.com/group/butterflychildren/cal Happy Birthday Misty Sunday July 5, 2009 12:00 pm - 1:00 pm Mon, 25 May 2009 16:39:19 GMT Gena http://health.groups.yahoo.com/group/butterflychildren/message/3812 http://health.groups.yahoo.com/group/butterflychildren/message/3812 For your information... please note the attached article from Italy, about quality of life for EB patients.   Best regards, Gena Brumitt Gruschovnik E.D., Mon, 25 May 2009 00:03:54 GMT http://health.groups.yahoo.com/group/butterflychildren/message/3811 http://health.groups.yahoo.com/group/butterflychildren/message/3811 Reminder from: butterflychildren Yahoo! Group http://groups.yahoo.com/group/butterflychildren/cal Happy Birthday Anne~Marie Tuesday May 26, 2009 All Day (This Thu, 21 May 2009 16:56:53 GMT Gena http://health.groups.yahoo.com/group/butterflychildren/message/3810 http://health.groups.yahoo.com/group/butterflychildren/message/3810 For your information... sharing a press release from NORD about their new program to develop effective treatments for rare diseases.   Best regards, Gena Thu, 21 May 2009 14:54:10 GMT Gena http://health.groups.yahoo.com/group/butterflychildren/message/3809 http://health.groups.yahoo.com/group/butterflychildren/message/3809 Dear all -  Please see the following new EB article, featuring our lovely friend, Novelette Munroe.  http://www.thestar.com/living/article/636886   Also Mon, 18 May 2009 23:06:11 GMT otm@... http://health.groups.yahoo.com/group/butterflychildren/message/3808 http://health.groups.yahoo.com/group/butterflychildren/message/3808 Dear all -   I am incredibly saddened to share with you the message I received from Maureen Peshkur last night - their granddaughter, Grace, passed away.  Thu, 07 May 2009 20:33:06 GMT Gena http://health.groups.yahoo.com/group/butterflychildren/message/3807 http://health.groups.yahoo.com/group/butterflychildren/message/3807 Hi, everyone - please have a look at this: http://www.tomorrowthinkofme.roundtablelive.org/  This site will transfer soon to www.tomorrowthinkofme.org, it is Fri, 24 Apr 2009 13:16:37 GMT Gena http://health.groups.yahoo.com/group/butterflychildren/message/3806 http://health.groups.yahoo.com/group/butterflychildren/message/3806 Hi, just forwarding this, in the event someone wants to take advantage of this Crocs sale. Hope the information is viewable on yahoogroups.   Gena From: Crocs Mon, 20 Apr 2009 23:02:18 GMT Gena http://health.groups.yahoo.com/group/butterflychildren/message/3805 http://health.groups.yahoo.com/group/butterflychildren/message/3805 Greetings!   I am happy to share some "official" good news with you.  Please feel free to pass it along to our other EB forums where I am not a member.  Sat, 28 Mar 2009 00:01:23 GMT http://health.groups.yahoo.com/group/butterflychildren/message/3804 http://health.groups.yahoo.com/group/butterflychildren/message/3804 Reminder from: butterflychildren Yahoo! Group http://groups.yahoo.com/group/butterflychildren/cal Happy Birthday Brogan Saturday March 28, 2009 12:00 am - 1:00 Thu, 05 Mar 2009 16:14:13 GMT Gena http://health.groups.yahoo.com/group/butterflychildren/message/3803 http://health.groups.yahoo.com/group/butterflychildren/message/3803 Hello, all -   Please see the update on the DEBRA International website, providing a preliminary program for the 2009 international conference that will Tue, 03 Mar 2009 16:39:42 GMT Gena http://health.groups.yahoo.com/group/butterflychildren/message/3802 http://health.groups.yahoo.com/group/butterflychildren/message/3802 Hello, EB friends -   One of our EB clinics has asked me to share this information with the EB community, and I'm glad to do so.  If you can, please post Sun, 01 Mar 2009 16:50:14 GMT Gena http://health.groups.yahoo.com/group/butterflychildren/message/3801 http://health.groups.yahoo.com/group/butterflychildren/message/3801 Hello, all -   Yesterday, International Rare Disease Day 2009, the European Organization for Rare Diseases (EURORDIS) launched "The Voice of 12,000 Mon, 23 Feb 2009 23:14:04 GMT Gena http://health.groups.yahoo.com/group/butterflychildren/message/3800 http://health.groups.yahoo.com/group/butterflychildren/message/3800 Dear All -     It is with tremendous sadness that I inform you... Alejandra Stuparich, EB clinic nurse and coordinator at The Hospital for Sick Children Thu, 19 Feb 2009 15:44:31 GMT Gena http://health.groups.yahoo.com/group/butterflychildren/message/3799 http://health.groups.yahoo.com/group/butterflychildren/message/3799 Hello, all -   If you are a member of EBZone or EBFriends, please pass this on as I am not a member of those groups... I haven't been on the yahoogroups or