Legislators and Medical Experts Team Up For Rare Diseases
If you live in Connecticut, and happen to have a rare disease, efforts are being made to help make your voice heard. When you’re one
- Rare Disease News
The Ehlers-Danlos Society
The Ehlers-Danlos Society
The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions. We support collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population. Our goals are world-wide awareness and a better quality of life for all who suffer from these conditions. Research is at the center of what we do, so that one day we will have a cure. Our strength begins with hope.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on Ehlers-Danlos Syndrome
How This Young Woman’s Double D’s Are Changing the World
Double D’s. And not the good kind. Disease and Depression. All too often, after being diagnosed with a chronic illness, patients just give up. They
This Teenage Girl Is Falling Apart and Not Just Emotionally
“I wish people would just take five minutes to look up Ehlers-Danlos syndrome to raise awareness.” These are the words of 15-year-old Mya Lilly Hurst,
Why Is This Woman So Upbeat in the Face of EDS?
If rare diseases were participating in a beauty pageant—where “beauty” means “little known,” “poorly understood,” and “damn near impossible to diagnose”—Ehlers-Danlos Syndrome (EDS) would be
How to Find EDS Support When You Need It Most!
There’s nothing quite like somebody who “gets it,” when you’re feeling low because you have Ehlers-Danlos Syndrome (EDS). Thankfully, there are organizations out there created
How is Ehlers-Danlos Syndrome Like Big Boobs? They Both Need Support!
Having a rare illness often makes people feel isolated and alone. When you feel as if no one understands where you’re coming from—or worse yet,
