Photograph courtesy of Michele L. Hopkins

The Zebra Network works to increase awareness, education, advocacy and support for patients with Ehlers-Danlos Syndrome.

None of this is possible without support from YOU. 

 

TZN is a series of relationships and partnerships woven to form a unique network. Through personal experiences and professional resources, we have formed The Network to better the lives of those with and affected by Ehlers-Danlos Syndrome

YOU can join the fight against Ehlers-Danlos Syndrome by becoming educated about the disease, learning what we do, joining our network for free, and by giving your support.

 

The Zebra Network is taking charge to make positive changes in our world, by the minute!

Your tax-deductible, charitable gift is important! 

Make a donation

Warrior Glam Bags program launches to new heights

The Warrior Glam Bag program, envisioned by teen patient Ashley Dixion, has reached new heights as Chloe Wildman, Miss Maryland's Outstanding Teen 2017, and Marta Bota, Ms. Virginia America 2016, have led drives to collect over 600 products in less than one month! The three superwomen have teamed up with local community leaders to make the impossible, possible and deliver Warrior Glam Bags full of make up and fun beauty products to teens in the hospital! 

To learn more about this program and donate products or financially, visit the Rays of Sunshine, Warrior Glam Bag program page, here! 

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New Information is always being Added! 

With the help of teacher and mommy to 2 zebras, Sara Waldrip, we have begun building a Parent's Guide to 504, PEP, and IEP for children in grades K-12. Complete with examples and important information to know before, during, and after your meeting, our goal is to help you and your child navigate the classroom with EDS.

View it in our Patient Guidebook, here!

 
 

We are now on Instagram! Follow us @TheZebraNetwork

Have something worth reposting? Tag us!

 
 

New Partnerships!

The Zebra Network has formed a new partnerships with Backpack Health, a health tech company who is building tools to help people manage their health details, care and communication. We believe everyone should be able to track their own health comprehensively, and do the same for the people they care about – no matter what their health concerns are, no matter what family means to them, and no matter what language they speak – all in one place.  

 
 

In the news:

Founder, Victoria Graham, was recently recognized for sharing her battles with Ehlers-Danlos Syndrome. First published with Babble and BBC, her story got international attention in Teen Vogue, Allure, Yahoo!, FOX News, MSN, Huffington Post, Washington Post, ABC World News with David Muir, Good Day DC, and more! Articles have been in English, Spanish, Russian, Greek, Italian, French, Arabic, and Dutch! 

Advocacy through the news is what we strive for! The more people who simply hear the term "Ehlers-Danlos Syndrome" increases recognition and awareness of the disease. Way to go, Victoria! 

     View the original BBC article and video, here


New Research Papers are out... what's the deal?

Great question! A series of papers were released from the American Journal of Human Genetics on March 15th, 2017 on Ehlers-Danlos Syndrome(s). 

These classification documents have been released and opened to the public! We have directed copies of these research articles easily available to you, here. Everyone here at The Zebra Network understands that this process is frustrating, scary, and confusing - it is our goal to be here for YOU and go through this journey with you. 

As we always say, our #1 goal is to provide actual patient support - this means that you are not on this journey alone and we will be here, with you, every step of the way. 

Outline of New Classifications can be found here

Links and Downloads to the Newly Released Articles can be found here

(free membership sign in required)


Photograph taken at Miss Appalachia 2016

Photograph taken at Miss Appalachia 2016

what we do

The Zebra Network strives to provide support to patients across the globe by working to promote awareness, increase education, improve advocacy, and provide unique support to patients with EDS. 

Learn More →

Photography sponsored by Ross Lewin, HoCo Photo

Photography sponsored by Ross Lewin, HoCo Photo

our Network

Join The Zebra Network for free!

Members of The Zebra Network receive free patient support resources, including patient-to-patient support, access to our medical professional network guide, inclusion in our community network sponsorships and further support in the battle against Ehlers-Danlos Syndrome. 

The Zebra Network Overview →

Not a Member yet? Join below!


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