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butterflychildren · Butterfly Children - Raising Awareness of Epidermolysis Bullosa (EB)
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Group Information

  • Members: 102
  • Category: Support
  • Founded: Dec 19, 1999
  • Language: English
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Welcome to Butterfly Children - raising awareness of Epidermolysis Bullosa - EB

The Butterfly Children have skins as fragile as a butterfly wing - skin so delicate and fragile that even the slightest touch can hurt. Please join and show your support. This is a gathering place for people of all walks of life, and whether or not you've even heard of EB, you're welcome. Drop by, make yourselves at home, we're here for all. Stick some music on, get a cuppa, and grab a chair, or if you're like me, loll on the floor. Let's put the world to rights :)

Great to have you on board :) - hon_w.rm and castlering (founders); rash_1999_uk and pinky_lefty_revolutionary.(moderators)

PLEASE NOTE - we have no affiliation with DEBRA or any other EB organisation. Any enquiries about EB, treatments and issues relating should be forwarded to DEBRA and your doctor.

This site is a member of the Epidermolysis Bullosa WebRing.
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Birthday Reminder
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
Posted - Sun Jul 5, 2009 11:44 am
 butterflychildren@yah...
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Fw: QoL in EB patients on British Journal
For your information... please note the attached article from Italy, about quality of life for EB patients.   Best regards, Gena Brumitt Gruschovnik E.D.,
Posted - Mon May 25, 2009 4:39 pm
 Gena
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Birthday Reminder
Reminder from: butterflychildren Yahoo! Group http://groups.yahoo.com/group/butterflychildren/cal Happy Birthday Anne~Marie Tuesday May 26, 2009 All Day (This
Posted - Mon May 25, 2009 12:03 am
 butterflychildren@yah...
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New NIH Initiative for Rare Diseases
For your information... sharing a press release from NORD about their new program to develop effective treatments for rare diseases.   Best regards, Gena
Posted - Thu May 21, 2009 4:56 pm
 Gena
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Please share this with other forums
Dear all -  Please see the following new EB article, featuring our lovely friend, Novelette Munroe.  http://www.thestar.com/living/article/636886   Also
Posted - Thu May 21, 2009 2:54 pm
 Gena
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Message History

Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec
2009 2 5 4 2 6 1
2008 3 1 1 2 1 3 2 2 2
2007 1 2 1 1 1 2 2 1 1
2006 1 1 4 2 1 2 6 3 3 2
2005 1 2 3 9 4 2 8 5 6 3 1
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2003 118 84 54 24 31 10 23 79 111 29 60 107
2002 55 152 56 46 62 150 151 415 230 121 95 72
2001 16 84 73 76 48 18 17 39 65 18 43 41
2000 51 48 180 126 66 41 33 43 28 17 56 15
1999 18
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