www.EDSawareness.com is a new online resource for the Ehlers-Danlos Syndrome community.
We provide informative resources for individuals suffering with EDS and their caregiver networks.
The mission of EDS Awareness is to ensure greater understanding of Ehlers-Danlos Syndrome, both in the general public and within the medical community. Driven by participation and shared learning, we hope to improve the quality of life for those afflicted with EDS – and those who care for them.
Website content is presented “by EDSers, for EDSers” – therefore, it is driven by user participation and learning – for the benefit of all EDSers. The greater the participation, the greater the value to the whole community.
- To assist and encourage support groups to organize and spread knowledge about EDS in their local communities
- To help EDSers locate valuable information, continue to learn, and create resources to share with their EDS peers
- To educate and inform medical practitioners and the public about Ehlers-Danlos Syndrome
- To promote EDS awareness on a local and national level
Only 5% of EDS patients are correctly diagnosed. More than 650,ooo Americans /year remain undiagnosed and have never heard of Ehlers-Danlos Syndrome. It is the intent of www.EDSawareness.com to locate these sufferers and help answer their questions, such as:
- How can I learn more about EDS?
- Where can I get help and a proper diagnosis for myself or someone I care for?
- Once diagnosed with EDS, where can I find support?
www.EDSawareness.com aspires to make Ehlers-Danlos Syndrome a “household word”.
Educate yourself – Then tell someone about EDS today…. and everyday!