Upcoming and Previous Webinar Speakers

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    Ross A. Hauser, MD
    10 Low-cost ways to improve symptoms of peripheral joint and spinal instabilities from hEDS, including brain fatigue, pain, POTS, MCAS and more.

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    Bonnie Nasar RDN
    “How to Build an EDS Plate: Feel Better with Food”?

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    Presenter: Jeannie Di Bon   MA PMA-CPT
    Title: “A Pain in the Hypermobile Neck”

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    Presenter: Dr. Eli Penn
    Title: hEDS and the Gastrointestinal Tract

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    Pradeep Chopra, MD
    “Management of Long Covid with EDS”

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    Eloise Stager, LMT, CST-D
    “The Role of CranioSacral Therapy in
    Pain Management and ANS Regulation”

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    Anne Maitland, M.D., Ph.D
    “Beyond allergies- mast cell activation diseases!”

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    Clair Francomano MD
    “EDS and Hypermobility Spectrum Disorders – Overview of Diagnosis and Management”

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    Sonny Mullen
    “A Guide to Medical Fundraising”

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    Karina Sturm
    New Feature-Length Ehlers-Danlos Documentary
    “We Are Visible”

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    Podcast Interview with Karina Strum
    ‘We are Visible’ Podcast Interview

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    Andrea Julian
    “Starting and Maintaining a Successful Support Group”

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    Maria Dastur, M.B.A.
    Organizing and Managing your Facebook and Social Media

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    Alan G. Pocinki M.D.
    Sleep Disorders in EDS

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    Ross A. Hauser, MD
    Consequences and Resolution of Joint Instabilities in H- EDS

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    Bonnie Nasar RDN
    “Optimizing nutrition to Decrease Brain Fog, Fatigue, & Pain”

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    Jeannie Di Bon. MA, PMA-CPT
    “How can Pilates help with my EDS Symptoms”

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    Petra Klinge MD
    “Managing Life with Neurological Symptoms and EDS”

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    Cathy L. Pederson, Ph.D
    “Understanding the Relationship between Chronic Illness and Suicide”

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    Patrick Agnew DPM
    “Foot and Ankle Treatments for EDS”

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    Susan Tran, PhD
    “Partnering with Families to Improve Functioning in Youth with EDS”

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    Paolo A Bolognese, MD
    Chiari I Malformation, EDS, and Craniocervical Instability

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    Lauren Stiles, JD
    “Understanding the Relationship Between Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome”

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    Jordan Tishler, MD
    Medical Cannabis – Pain Relief for EDS

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    Jeannie Di Bon, MA, PMA-CPT
    “Strengthen and Control Your Hypermobile Core With Pilates”

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    John Ferman
    Online EDS Physician CME Education

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    Anne Maitland, MD, PhD
    “Mast Cell Activation Disorder”

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    Joshua Milner, M.D.
    “Update on Tryptase Research”

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    Delia Chiaramonte, MD
    “Practical Stress Management: A Mind-Body Approach”

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    Manu Sood, MD
    Katja Kovacic, MD
    “Gastrointestinal Motility Disorders and Cyclic Vomiting”

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    Gisela Chelimsky, MD
    “Hypermobile EDS and Gastrointestinal Issues”

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    Pradeep Chopra, MD
    “Management of complex pain in children and adults with EDS”

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    Pradeep Chopra, MD
    “EDS Pain Management – Connecting the DOTS… part 3”

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    Dr. Ajoy Sarkar
    “Ehlers-Danlos Syndrome Hypermobility Type in the UK: Missed or Just Misunderstood?”

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    Sara Williams, PhD
    “Biofeedback: Training your Body to Relax”

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    Jan Dommerholt, DPT
    “Physical Therapy for EDS – Part 2”
    Why does it hurt all of the time?

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    Markus-Frederik Bohn, PHD
    “Tenascin X and Ehlers-Danlos Syndrome”

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    Dr. Marco Castori

    “Multidisciplinary Diagnostic and Management Approach to the EDS Patient”

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    Professor Claude Hamonet and Dr. Isabelle Brock

    “A French Perspective on Ehlers Danlos”

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    Dr. Delia Chiaramonte

    “An Integrative Approach to Pain Management”

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    Dan Doherty — YouScript / Genelex Corp.

    “Pharmacogenetic Testing to Assess Altered Drug Metabolism”

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    Dr. Alan Pocinki

    “Psychiatric Misdiagnoses in EDS: When is Anxiety not Anxiety?”

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    Dr. William Ericson

    “Orthopedic Issues in the EDS Hand, Wrist and Arm”

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    Dr. Norman Marcus

    “EDS & Pain”

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    Dr. Lawrence Afrin

    “Mast Cell Activation Syndrome”

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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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    Sara Williams, PhD

    “Cognitive Behavioral Therapy as a Coping Skill for EDS”

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    Dr. Anne Maitland

    “Mast Cell Activation Syndrome in EDS Patients (Part 2)”

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    Dr. Neil Schechter

    “Chronic Pain Hypermobile Children”

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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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    Dr. Holly Gilmer

    “Chiari Malformation in EDS”

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    Dr. Blair Grubb

    “Postural Orthostatic Tachycardia Syndrome (POTs)”

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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. Patrick Agnew

    “Soft Tissue Surgery in Collagen Disease (for EDS Feet & Ankles)”

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    Dr. Petra Klinge

    “Tethered Cord Syndrome in Ehlers-Danlos”

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    Kelly Clancy, OT

    “New and Emerging Manual Therapy Approaches for EDS”

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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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    Dr. Mitzi Murray

    “How, Why and When: Genetic Testing in EDS for the Non-Geneticist”

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    Ellen Lenox Smith

    “Living Life Again with Dignity Using Medical Marijuana”

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    Dr. Joan Stoler

    “Update on Complications and Rare Forms of EDS”

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    Jennifer Ortiz, MPT, WSC

    “Physical Therapy for Sexual Dysfunction in EDS”

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    John Ferman

    “Support Groups for Ehlers-Danlos Syndrome”

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    Dr. John Mitakides

    “Musculoskeletal Headaches in EDS”

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    Dr. Patrick Agnew

    “Foot & Ankle Issues with EDS”

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    Dr. Hal Dietz

    “Connective Tissue Disorder Research”

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    Dr. Theoharis Theoharides

    “Mast Cell Disorders”

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    Dr. Brad Tinkle

    “Introduction to Ehlers-Danlos Syndrome”

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    Dr. Ronald Jaekle

    “Ehlers-Danlos and Pregnancy”

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    Dr. Manu Sood

    “Gastrointestinal Disorders in EDS”

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    Dr. Forest Tennant

    “Managing Centralized Intractable Pain in Ehlers-Danlos”

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    Cynthia Allen, GCFP, STMI

    “The Feldenkrais Method”

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    Dr. Mark E. Lavallee

    “Exercise is Medicine”

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    John Ferman

    “Support Groups for Ehlers-Danlos Syndrome”

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    Dr. Howard R. Epps

    “Orthopaedic Considerations in EDS”

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    Jan Dommerholt, DPT

    “Physical Therapy for Ehlers-Danlos, Part 1”

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    Dr. Henry Burkholder

    “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”

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    Dr. Peter Byers

    “Vascular Ehlers-Danlos Syndrome / EDS type IV”

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    Subinoy Das, MD, FACS, FARS

    “Sinus Care for Ehlers-Danlos Syndrome”

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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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    Diana Lebron, MD

    “Headaches and Ehlers-Danlos Syndrome”

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    Shweta Dhar, MD, MS, FACMG

    “Coordination of Care in Adults with EDS”

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    Kathleen Kane, ESQ

    “Applying for Disability”

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    Dr. Richard Barnum
    “EDS and Psychiatric Illness Misdiagnoses”

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    Dr. Anne Maitland
    “Mast Cell Activation Syndrome” Part 1

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    Dr. Alan Pocinki
    “Chronic Pain, Poor Sleep, Depression, and Fatigue in EDS”

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    Dr. Derek Neilson
    “Proving the obvious: Next Steps for the Demystification
    of the Ehlers-Danlos Hypermobility Type”

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    Dr. Peter Rowe
    “Managing Orthostatic Intolerance in EDS”

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    Prof Joel Lamoure, RPh., DD., FASCP
    “Medical Psychiatry in Pain Management”

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    Eric Palmer, Orthotist
    “Bracing for EDS”

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    Dr. John Mitakides
    “TMJ, Cervical Instability and EDS”

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    Dr. Staci Kallish
    “Cardiac Manifestations in EDS”

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    “EDS and Pain… Connecting the Dots” Part 2

    Pradeep Chopra, MD

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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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    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

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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

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Know Your Love Language? Learn to Speak it Well Despite Chronic Illness

Posted on February 5, 2024

Did you know each of us shows affection and love in different ways? No matter who you might be cuddled up to this Valentine’s Day, it’s important to understand that a successful intimate relationship is a constantly evolving process of tuning in, adapting, and forging deeper connections, compassion, and caring for one another. Becoming aware […]

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Medical Gaslighting as a Source of Clinician-Associated Trauma

Posted on January 29, 2024

Content warning: This article discusses medical gaslighting and real-life examples of clinician-associated trauma. Please take care of yourself as you see fit.  As previously reported, clinician-associated trauma (CAT) is a new term used to describe the trauma created by repeated, negative clinical interactions. It was coined as a result of the study reported in “Clinician-associated […]

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Tethered Cord in EDS: A Patient Guide to Symptoms, Diagnostics, Treatments, and Risks

Posted on January 22, 2024

Understanding Tethered Cord Syndrome and Occult Tethered Cord in Ehlers-Danlos Syndrome (Also see the simplified version of this article) Unravelling the tethered cord has proven to be an elusive topic. Basically, there is not a great deal of credible insight or medical research available on it. To start simply, we begin with basic anatomy and […]

Add Comment | Comments Off on Tethered Cord in EDS: A Patient Guide to Symptoms, Diagnostics, Treatments, and Risks

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Children’s Book about Ehlers-Danlos Published

Posted on January 19, 2024

It’s here! Bendy Bones and Stretchy Skin: An Ehlers-Danlos Book by Pey Carter and their daughter Abigail Bailey hits the virtual shelves on January 23, 2024. Chronic Pain Partners has previously covered the details of the book–where the idea came from, how it took shape, the advocacy Pey does that is portrayed in the book, […]

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