Making the Hunt for Good Info Easier

One of the most difficult aspects of supporting a loved one with epidermolysis bullosa and educating oneself is gathering information. For many of us, that first time we begin seeking answers to our questions, it can be a bit overwhelming and we may feel alone in the search. But rest assured: you’re not alone. Many of the EB patients and their families who make up our community have been there before, too, and as a result, it’s led to several of them launching their own websites to raise awareness and provide helpful links to information for others. These are just a few websites you may wish to check out to collect a broad scope of information and some unique ways the sites can assist individuals and families on their quest to locate resources about EB.

*Please note: the following suggestions are provided as a courtesy to the EB Resource community for informational purposes only. Suggestions referenced are not intended to be a substitute for seeking the advice of a personal health care provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your health care provider.

  • DebRA of America.
    Most likely, you’ve already visited the DebRA of America website, but have you fully explored it? There may be more stored here than you’ve discovered, including an online archive of the organization’s quarterly e-newsletters, an inspiring collection of EB patient and family stories and access to an EB video to share with teachers and classmates to help educate others.
  • NIAMS.
    The National Institute of Arthritis and Musculoskeletal and Skin Diseases website, part of the National Institutes of Health, Department of Health and Human Sciences, can be very helpful for gathering general clinical information. Its Q&A about Epidermolysis Bullosa provides key answers to questions about the symptoms, treatment and research being conducted with regard to EB.
  • EB Nurse.
    This site coordinated by National Rehab offers a variety of general care information about such topics as nutrition, wound care, pain assessment and newborn care. The site also offers its own monthly e-newsletter, The EB Advocate, which often shares info about recent fundraisers, programs or medical supply background information. Click here to check out the site’s most recently published e-newsletter.
  • EB Info World.
    This recently revamped site features a collection of personal stories, articles from a variety of sources on such topics as wrapping instructions and EB-friendly foods. In addition, it includes sections about the different types of EB citing both data and clinical photos credited to DebRA International.
  • EB Friends.
    The Epidermolysis Bullosa Friends website offers a direct connection to fellow site members who must be registered to interact with other members. The site’s most unique feature is an online forum in which members may pose questions and gather suggestions and feedback from other patients, caregivers or family members who may have shared similar questions or circumstances at one time and can now offer their own experience as a reference point.
  • United Survivors with Epidermolysis Bullosa.
    The nonprofit hosts EB Survivor Camps, unique specialized camps designed specifically for children and teens diagnosed with EB and run by adults living with EB. Parenting looking to learn more about any future camps and eligibility, or those who wish to volunteer or learn more about the organization’s plans to build scholarship and mentoring programs, can contact USeb at epidermolysisbullosa@gmail.com.
  • EB Clinic at Stanford School of Medicine.
    This site coordinated by Stanford’s School of Dermatology features both patient and physician resources, in addition to clinical background about the disease, FAQs, wound care videos, and the research trial information.

Sources:

DebRA of America

NIAMS

EB Nurse

EB Info World

EB Friends

United Survivors with Epidermolysis Bullosa

EB Clinic at Stanford School of Medicine

Related Posts:

Stress Management for Caregivers

Free EB Information Resources

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Learning from Each Other, Part II

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