http://www.mdjunction.com/forums/epidermolysis-bullosa-discussions/feed http://www.mdjunction.com/forums/epidermolysis-bullosa-discussions/feed en-us Copyright (C) MDJunction.com. All rights reserved. Tue, 21 May 2013 22:21:04 -0700 http://www.mdjunction.com/forums/epidermolysis-bullosa-discussions/general-support/18187-making-the-most-of-the-epidermolysis-bullosa-support-group-experience#2868534 Hi! online i use the handle pandorazz2. I just recently came across your forum for EB. Please don't shut it down! I am a 35 yr old female and although my son doesn't have this disease, thankfully, I DO! While I do not have the recessive dystrophic form of this disease, my heart definitely goes out to the parents with children who do! I just want to make one small suggestion, you might want to separate your forum specifically into the three different types of EB, cuz I know there's other p... Sat, 02 Jul 2011 00:03:07 -0700 http://www.mdjunction.com/forums/epidermolysis-bullosa-discussions/general-support/2505732-epidermolysis-bullosa-videos-on-mdjunction#2518026 Hi - it's me again... I got many PMs from members asking to upload their own videos. At this point we can't add to the library . but hope we will be able to soon, we understand the importance of that! and another (not related) topic...Two weeks ago we added to the (now available on chrome too) the Groupon application that shows you the hottest daily deals in your town, every day. We received great feedback from the people using the toolbar so I suggest trying it out!!! CU roy... Wed, 09 Mar 2011 03:24:37 -0800 http://www.mdjunction.com/forums/epidermolysis-bullosa-discussions/general-support/1107568-wound-care-questions#1107568 As an owner of a wound care company I am in a unique position to answer any questions relating to wound care for EB patients. If I cannot answer them appropriately, I will get a wound-care-certified nurse practitioner to help. I am very interested in knowing more about the day-to-day issues regarding this disease and am hoping you will share your experiences. My partner and I are advocates for this disease as we have been very involved in helping EB patients nationwide. We will be participa... Tue, 29 Dec 2009 14:47:58 -0800 http://www.mdjunction.com/forums/epidermolysis-bullosa-discussions/general-support/602873-ribbons#602873 does the eb community have a ribbon?I thought they did but cant remember.would love to wear one in memory and honor of my son Eric... Sun, 21 Jun 2009 16:59:11 -0700 http://www.mdjunction.com/forums/epidermolysis-bullosa-discussions/general-support/18188-welcome-to-the-epidermolysis-bullosa-support-group#18188 Hello, Welcome to the Epidermolysis Bullosa Support Group. This Support Group is a comfort place for family members and friends to share and ask questions regarding EB. Feel free to introduce yourself, ask your questions and be around people who are in your spot. We'll be happy to hear your thoughts on how to make this better. Best, roy... Wed, 21 Nov 2007 03:29:22 -0800 http://www.mdjunction.com/forums/epidermolysis-bullosa-discussions/general-support/18186-how-to-join-the-epidermolysis-bullosa-support-group#18186 OK. The No. 1 of all No.1 questions ;-) "I can't seem to be able to respond to a post", "why can't I start a new discussion?". At the top right of any page in the support group you'll see a button for "join this group". Once you press it, you're automatically a group member and able to join the discussions. Try it ;-) now! Waiting for No.2, Any more questions? Best, Alon... Wed, 21 Nov 2007 03:29:20 -0800 http://www.mdjunction.com/forums/epidermolysis-bullosa-discussions/introductions-personal-stories/18185-technical-stuff-related-to-the-eb-support-group#18185 Hi , I'm Alon, nice to meet you all ;-) I'm in charge of all the technical stuff around the site and the support group. If you have any problem, want to ask a technical question or would like to suggest a new addition to the EB group – please contact me (via PM). I hope to CU here a lot. Sincerely, Alon... Wed, 21 Nov 2007 03:29:19 -0800 http://www.mdjunction.com/forums/epidermolysis-bullosa-discussions/introductions-personal-stories/18184-hello-epidermolysis-bullosa-support-group-im-roy#18184 Hello, My name is Roy. Alon and I run MDJunction. We hope that the Epidermolysis Bullosa Support Group will grow into a real meaningful place for all of you, as other groups in MDJunction are (you can see the as an example). We are here to help in any way we can. Enjoy, roy... Wed, 21 Nov 2007 03:29:18 -0800