Welcome to the Patient Network!
The Patient Network branch of The Zebra Network aims to provide unique and specialized support to patients with EDS, their families, caretakers and loved ones. These one-of-a-kind resources strive to achieve a level of support that is unavailable anywhere else; designed by patients, for patients.
What better way to learn about how to cope with EDS and other comorbidities than from patients, themselves! The goal of the Patient Guidebook is to provide helpful resources for patients, by patients. Please note that the Patient Guidebook should not be used for or in place of medical advice. This is simply what we have learned by living with Ehlers Danlos Syndrome.
Our Guidebook is ever growing! So, please continue to check back for additions and updates!
We need your help... do you have tricks, tips or coping mechanisms that may be helpful to other patients coping with EDS on a daily basis?
Rays of Sunshine
Through unique partnerships with the Miss America Organization, friendships formed during stays at the Ronald McDonald House Charities, interactions through social media, and a variety of community events, the "Rays of Sunshine" program has been formed.
"Rays of Sunshine" provides unique physical, mental and emotional support to patients with Ehlers-Danlos Syndrome and like conditions. From simple cards sent in the mail, friendship bracelets, blankets, and even warrior glam bags, Rays of Sunshine extends uplifting positivity to patients, from patients.
This comprehensive program forms a network that is key to increasing the quality of life for our patients!
Patient-to-Patient Communication Group
Communicating with each other is key to forming a network of relationships with each other!
We have integrated a closed board that allows you to freely discuss topics that you feel are important surrounding EDS.
We kindly ask that you refrain from derogatory, judgmental or demeaning comments that may carry any negative connotations or implications. It should be assumed that all stated is in opinion and should not be taken as physician guided medical facts. (Medical professional supported information can be found in our Physician and Medical Professional Network!)
That being said, your opinions, thoughts and views are freely welcome and encouraged! Let's get talking!
It is a goal of The Zebra Network to be able to provide support packages to Zebras traveling to Maryland, and surrounding areas, for medical reasons. These may include medical products otherwise unattainable; useful every day items like neck pillows, ergogenic pens; hospital needs for patients and caretaker like blankets, small pillows; allergen friendly, EDS specific snacks and nutrients; and more!
Request a support package.
If you or someone you know will be traveling to Maryland and is in need of support, please email us directly at firstname.lastname@example.org so that we can help! While resources may be limited due to fluctuating availabilities, we will do our best to cater to your needs!
We are always looking for new ideas to include in our support packages. Do you have an idea for something we can include? Recommend products, ideas, and more, below!
At this time, TZN does not have any direct partnerships to be able to provide travel assitance, however, we have gathered a list of organizations that can help! Please note that most of the organizations operate regionally based on need and availability of volunteers.
Please note that for many of these organizations, travel assistance is limited by distance traveled. Many volunteer pilots, for example, cannot exceed travel of 300 miles. Do not get discouraged, there is a way - if you have researched all options, please email us for help.
- Mercy Medical Angels - MMA bridges the access gap by providing charitable medical transportation throughout the United States and at times internationally.
- Air Charity Network - Air Charity Network is comprised of network member organizations who cover specific geographical service areas and coordinate volunteer pilot flights in the continental United States as well as Alaska and Hawaii.
- Angel Flight Central - Angel Flight Central, in the heart of the mid-west, collaborating coast-to-coast as we give hope wings every day!
- Angel Flight South Central - Helping people in need of free air transportation for medical and humanitarian purposes.
Serving Texas, Oklahoma, Louisiana, Arkansas and New Mexico.
- Angel Flight West - Our network of 1,400+ pilots throughout the 13 western states donate their aircraft, piloting skills, and all flying costs to help families in need, enabling them to receive vital treatment that might otherwise be inaccessible because of financial, medical, or geographic limitations.
- Angel Flight New England - Angel Flight Northeast's main service area covers 9 states: Connecticut, Maine, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, and Vermont.
- Angel Flight Oklahoma - We are a non-profit charitable organization of pilots, volunteers, and friends that are proud to serve the heartland area of Oklahoma, Texas, Arkansas, Missouri, and Kansas.
- Angel Flight South East - Angel Flight™ Southeast serves the state of Florida
- Angel Flight Mid-Atlantic - Angel Flight Mid-Atlantic provides medical air transport for patients departing from: District of Columbia, Delaware, Kentucky, Maryland, Michigan, Ohio, Pennsylvania, Virginia and West Virginia.
- Angel Flight East - AFE serves the Northeastern region of the United States, and for destinations beyond our reach, we link with other volunteer pilot organizations.