Archive for the ‘Social/Relational’ Category

Support For Friends of Hypermobiles/ EDSers

Posted on June 9, 2015

    A new, closed, Facebook group is available for support of friends who are caring for, supporting or living with people who have hypermobility/ EDS. _ _   If you meet these requirements you can join at NOTE: no EDSers will be admitted to the group, it is for support people only so that […]

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People With Invisible Disabilities, including Ehlers-Danlos, Need More Understanding

Posted on April 12, 2015

NPR radio ran a segment on invisible disabilities to commemorate the 25th anniversary of the Americans with Disabilities Act (ADA).  While progress has been made, much still needs to be done.  Click here for the original broadcast on NPR radio. Join the efforts to spread awareness of ADA on its July 26th anniversary. Resources include this Tool Kit, a project of the ADA […]

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Gabrielle’s Personal Battle with Ehlers-Danlos Syndrome

Posted on January 20, 2015

After being diagnosed with Ehlers-Danlos Syndrome, high-school student Gabrielle found comfort with members of the Young Life organization. She found purpose and motivation through her renewed spiritual connection. “Right after I got diagnosed with Ehlers-Danlos Syndrome (EDS) and figured out I could not play volleyball, I truly was devastated. I felt like I was missing out […]

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Rare Disease Day – February 28, 2014

Posted on February 28, 2014

Rare Disease Day is an annual awareness-raising event sponsored by the National Organization for Rare Disorders (NORD) in the US. Rare Disease Day is coordinated by EURORDIS at the international level.   The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. […]

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Listen to Radio Talk Show on “EDS Pain Management”

Posted on September 14, 2013

EDS Awareness was invited to participate in Radio talk show about EDS Pain Management. It aired on Monday night, 7/22/2013. (Click on the title above to listen to a replay of the interview.)  You will also learn about the EDS Awareness Support Group program. Click here  to listen to the radio show (after commercial). Enjoy the program. We appreciate your Likes […]

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Noah Baerman Presents at the 2013 EDNF Conference

Posted on July 29, 2013

EDSer Noah Baerman shared his journey & his jazz music with the EDS community at 2013 EDNF Conference in Providence, RI (August 1-3).  He says, “I am happy and proud to announce that I will be presenting this year at the Ehlers-Danlos National Foundation’s annual conference. This is a great honor for me and, perhaps more […]

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Ehlers-Danlos & the “Spoon Theory” get attention on BBC News

Posted on June 21, 2013

Many EDSers use the “Spoon Theory” to explain their fatigue and limitations due to the acute-chronic pain cycle.  BBC  News presents a series on “insights into disabled life” which shares the “Spoon Theory” with the public audience.  We hope this will increase awareness & understanding of  the compromises we EDSers must make to manage Ehlers-Danlos […]

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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 653 Votes)
  • 1 year (5%, 264 Votes)

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