Posted on July 28, 2020
Cincinnati Children’s Hospital has a Connective Tissue Disorder Clinic helping children with Ehlers-Danlos Syndrome. This video celebrates the hospital’s impact on children and their families.
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Upcoming and Previous Webinar Speakers
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Clair Francomano MD
“EDS and Hypermobility Spectrum Disorders – Overview of Diagnosis and Management” -
Sonny Mullen
“A Guide to Medical Fundraising” -
Karina Sturm
New Feature-Length Ehlers-Danlos Documentary
“We Are Visible” -
Podcast Interview with Karina Strum
‘We are Visible’ Podcast Interview -
Andrea Julian
“Starting and Maintaining a Successful Support Group” -
Maria Dastur, M.B.A.
Organizing and Managing your Facebook and Social Media -
Alan G. Pocinki M.D.
Sleep Disorders in EDS -
Ross A. Hauser, MD
Consequences and Resolution of Joint Instabilities in H- EDS -
Bonnie Nasar RDN
“Optimizing nutrition to Decrease Brain Fog, Fatigue, & Pain” -
Jeannie Di Bon. MA, PMA-CPT
“How can Pilates help with my EDS Symptoms” -
Petra Klinge MD
“Managing Life with Neurological Symptoms and EDS” -
Cathy L. Pederson, Ph.D
“Understanding the Relationship between Chronic Illness and Suicide” -
Patrick Agnew DPM
“Foot and Ankle Treatments for EDS” -
Susan Tran, PhD
“Partnering with Families to Improve Functioning in Youth with EDS” -
Paolo A Bolognese, MD
Chiari I Malformation, EDS, and Craniocervical Instability -
Lauren Stiles, JD
“Understanding the Relationship Between Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome” -
Jordan Tishler, MD
Medical Cannabis – Pain Relief for EDS -
Jeannie Di Bon, MA, PMA-CPT
“Strengthen and Control Your Hypermobile Core With Pilates” -
John Ferman
Online EDS Physician CME Education -
Anne Maitland, MD, PhD
“Mast Cell Activation Disorder” -
Joshua Milner, M.D.
“Update on Tryptase Research” -
Delia Chiaramonte, MD
“Practical Stress Management: A Mind-Body Approach” -
Manu Sood, MD
Katja Kovacic, MD
“Gastrointestinal Motility Disorders and Cyclic Vomiting” -
Gisela Chelimsky, MD
“Hypermobile EDS and Gastrointestinal Issues” -
Pradeep Chopra, MD
“Management of complex pain in children and adults with EDS” -
Pradeep Chopra, MD
“EDS Pain Management – Connecting the DOTS… part 3” -
Dr. Ajoy Sarkar
“Ehlers-Danlos Syndrome Hypermobility Type in the UK: Missed or Just Misunderstood?” -
Sara Williams, PhD
“Biofeedback: Training your Body to Relax” -
Jan Dommerholt, DPT
“Physical Therapy for EDS – Part 2”
Why does it hurt all of the time? -
Markus-Frederik Bohn, PHD
“Tenascin X and Ehlers-Danlos Syndrome” -
Dr. Marco Castori
“Multidisciplinary Diagnostic and Management Approach to the EDS Patient”
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Dan Doherty — YouScript / Genelex Corp.
“Pharmacogenetic Testing to Assess Altered Drug Metabolism”
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Diane O’Leary, PhD
“All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients
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John Ferman and Deanna Hamm
“World-Wide EDS Survey Results” by EDS Awareness
(2544 respondents from 26 countries) -
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Karen Foulks, OTR/CHT
Jesse Garris, Silver Ring Splint Co.“Anatomy and SilverRing™ Splints for Ehlers-Danlos Hands”
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Trish Meegan, DPT, L, ATC
“Physical Therapy for EDS: Including how your posture and thorax/ribcage affects your PT program”
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Dr. Clive Bridgham
“Chronic Pain Alternatives – with focus on inflammation and nutrition”
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Kevin Muldowney, MSPT
“Physical Therapy Protocol for Ehlers-Danlos Syndrome” (using the new EDS Physical Therapy Book)
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Frank Gargano PT, DPT, OCS, CIDN, MCTA, CWT
“Dry Needling for EDS Pain Management: Can muscle performance be improved?”
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Dr. Richard Barnum
“EDS and Psychiatric Illness Misdiagnoses” -
Dr. Anne Maitland
“Mast Cell Activation Syndrome” Part 1 -
Dr. Alan Pocinki
“Chronic Pain, Poor Sleep, Depression, and Fatigue in EDS” -
Dr. Derek Neilson
“Proving the obvious: Next Steps for the Demystification
of the Ehlers-Danlos Hypermobility Type” -
Dr. Peter Rowe
“Managing Orthostatic Intolerance in EDS” -
Prof Joel Lamoure, RPh., DD., FASCP
“Medical Psychiatry in Pain Management” -
Eric Palmer, Orthotist
“Bracing for EDS” -
Dr. John Mitakides
“TMJ, Cervical Instability and EDS” -
Dr. Staci Kallish
“Cardiac Manifestations in EDS” -
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Presenter: Kevin Muldowney, PT Click here for a link to the announcement page Video link is on this page
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EDS Pain Management. (Part 1)
Dr. Pradeep Chopra -
Presenter: Michael, Healy, DPT Click here for a link to the announcement page Video link is on this page
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Dr. Kenneth Goldschneider
Pain Management for EDS
Directory of Local Support Groups
We help those with Ehlers-Danlos find or organize support groups in their local communities. Our free program provides each group with a listing on the Support Group Directory and Map, free webpages, coaching, and more… If there is no group in your area, we will help you survey interest and connect with local EDSers. We also provide Educational recordings by EDS experts. Contact us at info@edsawareness.com for help or to be included in the directory.
Find a support group location by using the interactive map or the look-up menu below.
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Recent Articles
Posted on July 25, 2020
EDS and School Children
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 […]
Posted on May 30, 2020
September 29, 2019 by Emma Lunsford Click here for full article, Images and videos Every dog-lover knows the internal struggle of seeing a service dog with a “DO NOT PET” vest on. As hard as it is, it’s super important to know that service dogs aren’t defined as pets, but as workers. And for some people, they’re absolutely […]
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As a person who suffers from hEDS I am beyond thankful for the fact you guys are bringing not just awareness but you have products for us too! I am emotional writing this with tears rolling down my face for we have been ignored for so long and you guys are a blessing time to shop!
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Thanks so much for having Dr. Francamano on the webinar. As always your website is hands down the most helpful to all of us who have EDS.
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I can’t thank you enough for the service you are providing to help educate both patients and physicians.
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Thank you for all of your effort to increase awareness and knowledge of EDS and bless you for taking care of your late wife.
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You just made me feel so much less isolated thank you!!!!!!
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