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

New Information is always being Added! 

In honor of October, Dysautnomia Awareness Month, we are adding new information into our Educational Resources for Dysautonomia!  Here's a sneak peak that can be found on our POTS page:

 
 

We are now on Instagram! Follow us @TheZebraNetwork

Have something worth reposting? Tag us!

 
 

New Partnerships!

Hurry! The promo code for 50% off ends on Monday, October 9th - Check out Backpack Health, now!

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.  

 
 

"Our mission is to make it easy for everyone to access, own and control all of their health information to support better health for themselves, their loved ones, their communities, and for us all.  We're dedicated to helping those within the EDS community, providing tools to make the day-to-day health management easier, and eliminating the need to carry around the binders of paperwork that come along with tracking complex health conditions.  Our app provides families with a way to collaboratively manage the many details and data involved with EDS."

 

By partnering with The Zebra Network, Backpack Health has launched a promo code discount for their services. 

To get started and take advantage of a 50% discount offer extended to the EDS community, please follow the steps below:  

 

1. Visit www.backpackhealth.com 

2. Click on "Sign Up"

3. Once you enter your email address, you will receive an email from us (if using gmail, please be sure it didn't get sent to the "Promotions" folder) - open that email and click the link to complete registration. 

4. When you get to the subscription screen in the registration process, enter the promo code ZEBRA (all caps) and hit "Apply".  You'll then see that a 50% discount has been applied to the pricing options. 

5. Once you've completed registration, go to the App Store or Google Play and search for "backpack health".  Once you download the app, you will be able to enter your information and start using the app on your phone. 

PLEASE NOTE: the 50% discount code, ZEBRA, expires on October 9th, so don't miss out! 


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


UPDATE

New Research Papers are coming 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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