EB Resources

Here are some EB resources that have helped us and work to provide awareness. We believe the work they are doing in EB research and/or helping families in need as they deal with EB is incredibly important. We need a cure now and these organizations are helping our baby Kiira, along with numerous other families, toward that goal. If you feel moved to donate to one of these organizations, I encourage you to do so.

DebRA:
The mission of DebRA of America is to improve the quality of life for all people living with EB, their families, and caregivers through programs and services while funding research to find a cure and treatments for Epidermolysis Bullosa. Learn More

I Refuse EB:
I Refuse EB was launched in 2012 by EB advocate Christie Zink to help raise awareness for EB, promote advocacy and support the research efforts taking place at the University of Minnesota by Dr. Jakub Tolar through the University of Minnesota Foundation (UMF). Learn More

Stanford Genetic Skin Research:
Research in the Stanford Department of Dermatology is dedicated toward understanding various skin diseases, among them genetic diseases, such as epidermolysis bullosa. Your support sustains this research mission and can help children like these actual GSDC and LPCH EB patients pictured. Your gift can help heal or prevent genetic skin diseases in future generations. Learn More

Epidermolysis Bullosa Medical Research Foundation:
The EBMRF is a volunteer, non-profit Foundation dedicated to helping medical scientists learn more about EB, it’s causes, the development of successful treatments, and, ultimately, its cure. Learn More

EB Research Partnership:
We are the largest nonprofit dedicated to funding research aimed at treating and ultimately curing EB, a group of devastating and life-threatening genetic skin disorders that affect children from birth. Learn More

The Butterfly Fund:
We help families in many ways including, but not limited to, minimal financial aid, clothing, services and care. Learn More


4 Responses to EB Resources

  1. Chuck Farnworth says:

    I have two sons with EB. The disease is not fair and we look forward to a cure in the near future, but these precious angels will bring joy and happiness to you and your family. Enjoy and cherish the bond that you will develop and all the people that will come into your life to help lift and support you through this trial. We wish you the very best and pray for you to have the strength to endure.

  2. Darlene M says:

    I saw your story on Yahoo news. My heart went out to you and I started praying right away and then I came to your page and was blessed by your faith in Jesus. Just know, that we are praying.

  3. Pingback: Thank you! | Kiira Kinkle

  4. Craig says:

    I have some good friends who lost their daughter to this and started a non-profit to promote the development of a cure. Please check it out http://www.childrenscancer.org/puck/

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