100 Links for EB Families

We just realized that this entry marks our 100th blog! In honor of the milestone, we offer a handy reference list of 100 web links for EB families that may be worth a visit. Next time friends, family or co-workers ask what they can do to learn more about EB or support families or clinical research, we suggest sending them to this blog.

Here’s to our next 100 conversations in the EB Resource community!

*The following links are provided as a courtesy to the EB Resource community for informational purposes only. Please note that content offered at these sites does not reflect a recommendation or endorsement by EB Resource and is not intended to be a substitute for the advice of a health care provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your personal health care provider.

  1. Fast Facts about EB
  2. The Wound Care Clearinghouse
  3. Support Networks vs. Support Groups
  4. DebRA New Family Advocate Program
  5. EB Takes Many Shapes: EB Simplex
  6. EB Takes Many Shapes: Junctional EB
  7. EB Takes Many Shapes: Dystrophic EB
  8. Epidermolysis Bullosa, The Mayo Clinic
  9. Jackson Gabriel Silver Foundation
  10. The EB Friends Web Community
  11. Regional EB Center, Children’s Hospital Colorado
  12. EB Nurse
  13. The EB Advocate Facebook Group
  14. National Institute of Arthritis and Musculoskeletal Skin Diseases (NIAMS)
  15. Epidermolysis Bullosa Medical Research Foundation (EBMRF)
  16. Blood and Marrow Transplant, University of Minnesota Amplatz Children’s Hospital
  17. Befriend EB
  18. Becoming a Proactive Caregiver
  19. DebRA Nurse Educator, Geri Kelly-Mancuso, RN
  20. EB & the Importance of a Good Diet
  21. Happy Green Bee
  22. Dr. Alfred Lane, Lucile Packard Children’s Hospital at Stanford School of Medicine
  23. Raise Your Voice about EB
  24. Tyler Fisher EB Awareness
  25. Lotus Tissue Repair
  26. Weathering Winter with EB
  27. Epidermolysis Bullosa Clinic, Stanford School of Medicine
  28. Ask the DebRA Nurse, DebRA of America
  29. Stress Management Tips for Caregivers
  30. Skin Cancer Prevention, CDC
  31. Connect Ed Wound Care Education, Hollister Wound Care
  32. Safeguard Skin for Summer
  33. Bringing Carson and John Home, blog by the Cannell Family
  34. Debra’s National Physician Referral Service
  35. The Importance of Connecting
  36. Scott Ward-Schofield Memorial Fund
  37. Clinical Symposium on Advances in Skin & Wound Care
  38. Life as an Adult with EB
  39. Amy O’Neill (blog)
  40. Epidermolysis Bullosa, Pioneering Unique Cures for Kids (PUCK)
  41. Stress Management – Support Groups, Mayo Clinic
  42. MRSA: What You Should Know
  43. Questions and Answers about Epidermolysis Bullosa, NIAMS
  44. Nutrition for Babies with Epidermolysis Bullosa, DebRA International
  45. Tips to Identify and Manage Caregiver Burnout
  46. “Rays of Hope in Battling Agonizing Disease,” New York Times (March 2010)
  47. Epidermolysis Bullosa Center, Cincinnati Children’s Hospital Medical Center
  48. Before the Morning, blog by the Williams Family
  49. Hollister Wound Care
  50. Dental Care & EB, from a Dentist’s Perspective
  51. Butterfly Wishes for Ellie
  52. The Facts about Depression
  53. DebRA Family Crisis Fund
  54. What to Know When Using Restore® Foam Dressings
  55. What to Know When Using Restore® Contact Layer Dressings
  56. What to Know When Using Restore® Contact Layer Dressings with Silver
  57. Using Restore® Calcium Alginate Dressings
  58. What to Know When Using Restore® DUO Dressings
  59. Using Restore® and Restore Lite Foam Dressings Featuring TRIACT Advanced Technology
  60. EB Public Service Announcement
  61. Advice for Planning Your Own EB Fundraiser Walk
  62. Team Joella, blog by the Murray Family
  63. Plan a Local DebRA Event, DebRA of America
  64. Complications of EB
  65. DebRA of America YouTube Channel
  66. Epidermolysis Bullosa Clinical Trials, U.S. National Institutes of Health
  67. Jonny Kennedy North East
  68. Blogging Your Story: Five Things You Should Know
  69. “EB”ing a Mommy, blog by the Roth Family
  70. A to Z of Topics Related to Nutrition and EB, DebRA International
  71. 2011 International EB Awareness Week Facebook Group
  72. EB Clinic, Lucile Packard Children’s Hospital at Stanford
  73. In Garrett’s Memory, Garrett’s House
  74. The International EB Forum
  75. Eric Lopez Grant Fund
  76. Four Busy Bees and Two Little Butterflies, blog by Sara Denslaw
  77. EB Store for Families, DebRA of America
  78. Back to School Tips for EB Families
  79. The Electronic Textbook of Dermatology
  80. Addressing Confusion and Questions about EB
  81. DebRA Newsletter Archive
  82. Loving Baby Daylon, blog by the Edling Family
  83. United Survivors with Epidermolysis Bullosa
  84. Wayne-Westland Friends of EB
  85. What to Expect in Support Groups
  86. National EB Awareness Week, DebRA of America
  87. EB-Friendly Clothing Tips
  88. Camp Wonder, Children’s Skin Disease Foundation
  89. The Wound, Ostomy, and Continence Nurses Society
  90. Tips for Caring for a Newborn with EB
  91. DebRA Ambassador Program
  92. Practical Lifestyle Tips for EB Families
  93. EB Info World
  94. JEB Testing, GeneDx
  95. DebRA’s Patient Care Conference 2010
  96. Rare Disease Day
  97. Planning Your EB Awareness Week Fundraiser
  98. What Is Epidermolysis Bullosa? Classroom Video
  99. Rafi’s World, blog by the Kopelan Family

100. EB Resource Facebook Community

Related Posts:

Join the EB Resource Conversation

Social Media for EB Storytelling

Making the Hunt for Good Info Easier

4 comments

  1. the moderator says:

    We know our list is by no means a complete list, but leaving the
    Butterfly Fund off was definitely an oversight on our part. We’re so happy
    you’ve included your link here so we can still let people know what great
    things your organization is doing. Please keep us updated and email us at leslie.rader@hollisterwoundcare.com
    about any upcoming news and events so we keep the community informed.
    Thanks so much! 

  2. the moderator says:

    You got it!

  3. Laurie Sterner says:

    Hopefully we can make the 101 space – The Butterfly Fund
    http://www.thebutterflyfund.org


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