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Sofia’s Helping Hand

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. […]

Pediatric Pain Warrior Survey

  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 […]

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

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).  […]

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

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 […]

Ehlers-Danlos Nursing Continuing Education Program

We are very excited to announce the introduction of the First, Online, Free, Ehlers-Danlos Nursing Continuing Education program. Nursing is the largest healthcare profession, with over 3.6 million nurses in the US alone. Nurses spend more time with patients than many other health professionals, and they are experts in helping patients live with their health […]

September 7 Kansas City Ehlers-Danlos Syndromes and Associated Conditions Seminar

Topics To Be Covered: Genetics, Cardiology, Gastroenterology, Dysautonomia, Mast Cell Activation Syndrome, Physical Therapy,  Occult Tethered Cord, Chronic Pain Management and Connecting the Dotsbetween Medical Complexities Provided By: EDSKC Collaboration Inc. in partnership withclinicians from Children’s Mercy Kansas City andthe University of Kansas Medical Center CLICK here for Program Brochure CLICK here for Physician Seminar […]