Welcome!

Please excuse the mess, this is a work in progress! We already had the first glitch when the theme template immediately published live, with stock photos and all! Pages will change and adapt as new content is added. The Zebras On Parade project began as an alternative way to network with other Zebras, share their stories, and contribute to the worldwide efforts to raise awareness and increase research for Connective Tissue Disorders and other RARE and complex conditions. The website, blog, and future podcast will showcase individuals, groups, organizations, campaigns, research projects, and materials that contribute to progress in awareness, education, diagnostic methods, genetic research, treatment options, and understanding links to connected conditions.

Over the years since my diagnosis with Dysautonomia, Hypermobility, Gastroparesis, TBI, and Ehlers-Danlos Syndrome, I accumulated a mass of information about Connective Tissue Disorders… theories, research, charities, medical advice… literally thousands of links to articles, webpages, blogs, videos, fundraisers, support groups, awareness campaigns, treatment options… lists began as browser bookmarks separated into folders, then stored to various electronic devices, only some making their way to social media sites. It became so disorganized that I had a hard time sorting through the information to find specific things I found remarkable, interesting, unique, helpful, or innovative during my research.

While I attempt to sort everything I have stored into a database format for another part of this project, I decided to make the first 10 features about those who have had the biggest impact on my life or other Zebras worldwide, either through their medical expertise, awareness efforts, or insight they have provided to understanding EDS.

Stay tuned for the first feature post in June: “If you can’t connect the issues, think connective tissues.” ~Dr. Heidi A. Collins, MD. While she’s not claiming the quote, her message is important for all people in the healthcare industry, as well as many of us with RARE and complex conditions.

If you would like a specific person, topic, or organization featured on this site, please utilize the CONTACT form. Thank you. Zebras Unite!

Be a part of the #HealthCareRevolution: Take  ACTION! or CONTACT us for ideas and join us in #TestDontGuess and #RightToKnow campaigns on Twitter and Facebook!

 

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