Archive for the ‘Uncategorized’ Category

October Ehlers-Danlos News & Updates

Posted on September 30, 2021

      The Funny Bone News   Because with EDS, every bone is a funny bone.    Stronger Together ‘Positive Vibes to Keep Us Alive’   Hi. How’s it going? My name is Sublime Roo; I’m a UK, Indie Music Producer and I’m an EDS sufferer too…  A typical story mine, wasn’t diagnosed ‘til twenty-five; […]

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Sofia’s Helping Hand

Posted on March 23, 2021

My name is Sofia, and I am 13 years old. I am an American / Peruvian living in Florida. I live with my mom, dad, and younger sister and younger brother. I have 3 ferrets, a dog, and 2 stray cats.​    I love animals, especially horses. One day I hope to own a horse. […]

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Pediatric Pain Warrior Survey

Posted on February 10, 2021

  Are you caring for a child who is experiences chronic pain?  We need your help with this survey that will enable the Pediatric Pain Warrior program to better recognize, support and advocate for these special kids.  The Pediatric Pain Warrior Program, a division of the U.S. Pain Foundation, provides help and hope to children […]

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Survey About Support in Clinical Trials – Rare Disease Patients/Caregivers- Chance to win gift cards!!

Posted on January 31, 2021

Purpose of This Survey  to better understand people’s needs for travel support services and other services that aim to  reduce the burdens of participating in a clinical trial. (It’s important to note that these services  are not funded by patients, they’re always funded by Sponsors of clinical trials and provided  to patients at no cost).  […]

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The Third EDS Nurse’s Educational Training Course is Now Available.

Posted on June 28, 2020

Chronic Pain Partners 501(c) (3) in association with EDS Awareness are releasing the third in a series of free educational programs about Ehlers-Danlos Syndromes from a nursing perspective. Education credits are approved by the Wisconsin Nurses Association, an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation Participants must complete and submit the evaluation […]

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