Archive for the ‘advocate’ Category

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Together, we aren’t rare! Let’s talk about Ehlers-Danlos syndrome

Posted on May 12, 2021

CLICK HERE for the complete article in Ability Magazine Twenty-five million people in the US are affected by rare diseases – many of them are genetic and life-limiting. One of these conditions is Ehlers-Danlos syndrome (EDS), an unknown and neglected disorder of the connective tissue that can lead to severe disability. Over the last years, popular […]

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2018 Excellence in Advocacy Award From AARP Ohio

Posted on March 30, 2019

John Ferman, Co-founder of the EDS Awareness a.k.a. Chronic Pain Partners 501(c)(3) non-profit program received the 2018 Andrus Excellence in Advocacy award at the AARP Ohio Volunteer Summit DInner in Columbus Ohio on October 29, 2018. John has been a full time volunteer since he retired in 2013 and has: Helped to create over 115 local […]

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CSF – Unite@thehill – June 23-25, 2018

Posted on April 11, 2018

For the past few years, CSF has stormed Capitol Hill with you to make a difference for people living with Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and many other related disorders… and it seems like Congress is really listening. I n February 2015, Congress voted to increase the NIH budget by $31.3 billion to support more biomedical research. In 2016, […]

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Mandy Harvey’s Performance in Warren Ohio

Posted on April 10, 2018

We were excited to attend Mandy Harvey’s performance in Warren, Ohio She was interviewed and described her struggles with Ehlers-Danlos Syndromes. Click here for a link to the recording of her performance. She was introduced around the 18 minute time mark. Click here for more about Mandy Harvey

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The Truth is that I will Always be Tired. It’s Part of my EDS.

Posted on March 20, 2018

Tiffany wakes up exhausted with her Ehlers-Danlos Syndrome issues. Life with Ehlers Danlos: Surviving Exhaustion While Still “Adulting” By Tiffany Early I’m tired. That’s not exactly a news flash. I’m forever and always tired. One thing that I have in common with the majority of the chronic illness and rare disease community is my chronic […]

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Mandy Harvey Discusses her Struggles with Ehlers-Danlos Syndromes

Posted on February 24, 2018

By Natalie Angley, CNN Mandy Harvey takes people on a journey when she sings. “The thing I love about music … you can close your eyes and be transported back to a memory or a dream or a feeling,” the 30-year-old said. Harvey has near-perfect pitch, so it’s hard to believe she is deaf. “I was […]

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Activities at the EDS Society Conference in Las Vegas 9-6 thru 9-8

Posted on September 11, 2017

We participated again in a very successful EDS Learning Conference. Here are connections to activities at the EDS Society Conference in Las Vegas 9-6 thru 9-8             New EDS Physician CME Educational Online Program announced   Click here for Jon Rodis EDS Society Conference Summary Click here for Dr. Chopra’s presentation […]

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