Frequently asked questions

FIGHT vEDS is a non-profit focused on vascular Ehlers-Danlos ("vEDS"). We support patients with simple, easy-to-understand information about vEDS. For those without a diagnosis, we help them understand if they have vascular EDS through introducing them to simple testing options. For patients with vEDS, we help them understand the newest research and most cutting-edge treatment options.

Launched in 2018, the genetic testing program is a patient support program to help make testing simple and easy. The program helps you understand testing options and connects you with testing labs. FIGHT vEDS does not perform testing and does not give medical advice, but as a non-profit, we work with the leading labs to help them design testing options to help vEDS patients. Our goal is to make sure you get the fastest, cheapest, easiest testing option for you.

FIGHT vEDS is a leading vascular Ehlers-Danlos information source. Our website gets thousands of visits each month, but we realized we had no information for one of the most commonly asked questions we heard - "Do I have vascular EDS?". In 2018, we realized we needed to help our visitors answer this important question.

Vascular Ehlers-Danlos is a rare diease and most people will test negative. However, for those who test positive, there have been advancements in vascular EDS treatments and management that can greatly improve outcomes. The first step is taking control of your healthcare so that your doctors and insurance will give you access to those treatments. Also, for those with confirmed diagnoses, FIGHT vEDS will help you get all the information you need on vascular EDS. We'll help you set up a personal physician care team, connect you with other vEDS patients, and even send the latest treatment information and research to your doctor. We want you on the best treatment plan as soon as possible so you can take control of your healthcare.

Yes! FIGHT vEDS is working with leading testing labs to lower the cost of vEDS diagnosis. We currently have discounts available for people who have a direct relative with confirmed vEDS, bringing the total testing cost to $50. We may have more discounts coming soon.

Getting tested has been one of the most difficult challenges for vEDS patients. The common problems we hear include: - "Doctors don't believe I have vEDS so they won't order the test" - "Testing costs thousands of dollars" - "Testing is complicated and I have to visit multiple doctors and get blood drawn in a lab" - "It takes months to see a geneticist and over a year to get my results" - "When my results came back, the geneticist had never seen vEDS before and didn't understand the diease well enough" The FIGHT vEDS program helps to solve all that for those able to pay out-of-pocket (approximately $200): - Your doctor does not need to approve the test - it's your choice to make - The test can cost as little as $200 with the FIGHT vEDS discount - The testing can be done at home through an easy-to-use saliva kit - No waiting, you can order today and get your results in 4-6 weeks - We have ensured that friends of FIGHT vEDS who order the test get free genetic counseling from a licensed genetic counselor that knows vascular EDS and related disorders If you are not able to pay out-of-pocket FIGHT vEDS can explain to you additional ways to get tested and provide ideas for how to avoid the problems of being tested the "old way".