Wonderful support symptom and knowledge base. Very useful organization for those families directly and not directly effected from EDS.
Thank you so very much for taking the time to post this kind message. We deeply appreciate it. Thanks again!!!
EDS Today has helped me understand Vascular Ehlers Danlos Syndrome in a way I could understand and identify with. The people who administer this organization are compassionate, knowledgeable, and dedicated to making the public aware of this sometimes devastating syndrome. Sadly, my son passed away from VEDS at age 22 and this group was right there with me as if he were one of their own. My heart goes out to all who are dealing with EDS and VEDS but I'm thankful beyond words there are organizations out there to turn to for information and support. Thank you.
Thank you so very much for taking the time to post this kind message. We deeply appreciate it. You're in our hearts ♥ Thanks again!!!
My son was recently diagnosed with a type of EDS. EDS Today is a great site to educate patients and the general public on what the disease entails, offers treatment methods, and also raises money for researching treatments and cures of EDS. The board members have been touched by this disease and have made it their mission to help educate others so that lives will not be lost so early.
The website is very easy to navigate, offers easy to understand information, hot links to additional EDS sites, videos, contact info for all EDS organizations worldwide and so much more. It is the central hub. This site is to EDS patients as google is to the common person...a great place to search for whatever you seek.
The members of EDS-Today have been working incredibly hard to bring awareness to the community of a rare and potentially fatal disease. Their commitment has brought knowledge not only to the public but the medical community as well. Helping to decrease a long and arguous process of misdiagnosis and surly helping to save lives. All the while providing personal support to those living with this syndrome and families coping with the loss of their loved one. An amazing and knowledgable organization to say the least.
This organization works tirelessly to inform and educate EVERYONE they can about a terrible disease that so frequently goes un/misdiagnosed until it's too late. They have helped so many understand and cope with this disease.
My son has EDS. There is not a lot of information and support available on the web. It is an under diagnosed crippling disorder. EDS TODAY provide research information, awareness, advocacy and education. Not only that they are here for us. Having an invisible illness is a very isolating condition to have. Having people to talk to that understand is vital. I am grateful for the support, understanding and education that EDS TODAY provided to me and my family and many people I know that have needed support.
Being a family member of a young man who lost his life by not being correctly diagnosed, I want to let everyone know how important these advocates are in getting the word out and saving lives. The support they provide to people with EDS and their family members is second to none.
Its a amazing cause that has helped bring awareness to something that has affected a beloved cousin we had the unfortunate loss of several years ago.