Photograph courtesy of Michele L. Hopkins

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

Your tax-deductible, charitable gift is important! 

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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.

 

Highlights

Events:

Sara Kestenbaum, of Bryn Mawr in Pennsylvania, has generously chosen to raise awareness money for Ehlers-Danlos Syndrome, through The Zebra Network, and the StopConcussions Foundation for her Bat Mitzvah Fundraising Project.  

She is hosting a Carnival that is complete with games, dancing, raffles, fun competitions, and more!! 

The event will be this Sunday, April 30th. Admission is $20 with family discounts and sponsorship packages also available! 

For more information on Sara's Bat Mitzvah Carnival Project,

please email victoria@thezebranetwork.com with the subject line "Sara's Carnival" 

On behalf of The Zebra Network, we would like to commend Sara on her selfless work and thank her for the great impact she is making in our community!  We are so proud of you, Sara!

Tax-Deductible charitable gifts made through Sara's Bat Mitzvah fund raising to The Zebra Network can be made, here 

Sara's Bat Mitzvah Carnival - Direct Donations

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 →

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