welcome to oneEDSvoice

- a positively charged Ehlers Danlos Syndrome community.
  • join today!

connect with and encourage others with oneEDSvoice, send "hugs, thanks and prayers"

find expert physicians, specialists, genetic and nutritional counselors

get notified of new research and clinical trials, use the matching wizard!

the heart of oneEDSvoice, where you can share your thoughts, ask questions and discuss the latest oneEDSvoice news and research. post photos, videos and links. find support from a friendly, knowledgeable community!

rareTeams learn more
popular content
Ehlers–Danlos Syndrome—Hypermobility Type: A Much Neglected Multisystemic Disorder
Ehlers–Danlos syndrome (EDS)—Hypermobility Type (HT) is considered to be the most common subtype of EDS and the least severe one; EDS-HT is consid... read more
source: Rambam Maimonides Medical Journal
Understanding Vascular Complications: A Primer of Essential Definitions
Blood vessels derive their strength from a web of structural proteins. The vascular complications of EDS arise from a genetic protein defect that pred... read more
source: Ehlers-Danlos National Foundation (EDNF)
The Ehlers-Danlos Syndrome, a Disorder with Many Faces
The Ehlers-Danlos syndromes (EDSs) comprise a heterogeneous group of diseases, characterized by fragility of the soft connective tissues and widesprea... read more
source: Clinical Genetics
What it Was Like to Grow Up With Ehlers-Danlos Syndrome
When I was 6 years old I fell off my bike, and I cried so much that my dad had to carry me inside. For the next few days, I walked around with a bruis... read more
source: The Mighty
17 Things People With Ehlers-Danlos Syndrome Wish Their Doctors Knew
Though people with Ehlers-Danlos syndrome experience a wide array of symptoms and may present the condition in many different ways, most EDS “zebras... read more
source: The Mighty
new content
rarePoll

Have you ever been genetically tested for Ehlers Danlos Syndrome? Why or why not?

coming soon!

play encouragement power and get points and rewards for you and your community!

recruiting trials
view all trials
rareTeams share privately

rareTeams allow you to create a small group with whom you can share and communicate exclusively, rather than with the entire community.

join today and start your own rareTeam!
4 exciting and helpful features - all in one place
your curage feed on oneEDSvoice.com
encourage media feed - oneEDSvoice community ignites!
  • have an instant community where everyone is friends - no need to send requests
  • create your rareTeam of closest friends, family members, caregivers and healthcare providers connect with them during crisis
  • EDS-Related info panels - learn more because oneEDSvoice does the research for you!
  • use the sentiment palette to clickEmoteTM by sending and receiving hugs, thanks, prayers and cares - no more awkward "like" buttons
information on oneEDSvoice clinical trials
clinical trials & features designed for easier access
  • find opportunities to participate in research, and advance the pursuit of treatments and cures
  • easily locate clinical trial centers who need you and are near your home
  • get a clinical trial report that matches you with clinical trials
  • become or find a real-person mentor to support and guide each other in clinical trials
  • learn more about clinical trials in our education center of videos and step-by-step guides
curated news about oneEDSvoice
trustworthy disease information curated by experts
  • scientific papers written by the researchers and doctors studying treatments and cures
  • bios and profiles of expert doctors, counselors, advocates and other leaders
  • the rest of the internet - we found super cool stuff, including movies, fundraisers, patient assistance programs and more
  • the latest news about Ehlers Danlos Syndrome
  • patient videos, slidedecks and infographics
  • constantly updated 24/7
oneEDSvoice mobile app
coming soon!
our positive community, right in your pocket

EDSWallet

  • medical history
  • physician contact information
  • personal intro video with your friends, family and medical team

EDSCrisis

  • out of town? need to find an ER?
  • request medical assistance and geolocate centers to get you help fast

EDSChat

  • stay in touch with your EDSTeam of friends, family and medical team during your crisis.
  • send photos, chat and pass the time with positive support