Upcoming and Previous Webinar Speakers

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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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    Ehlers-Danlos Spectrum and Dysautonomia

    Dr. Golder N. Wilson

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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

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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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    Presenter: Ellen Lenox Smith Click here for a link to the announcement page.  Video link is on this page

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        Presenter:  Carl Mentesana, DDS Click here for a link to the announcement page  Video link is on this page

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    Presenter: Stephanie Gandomi, MS 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

    Learn More

Directory of Local Support Groups

We help EDSers 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. 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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2017 EDS Learning Conference September 7th – 9th

Posted on March 20, 2017

  Save this date! The Ehlers-Danlos Society has scheduled the 2017 Ehlers-Danlos Society Global Learning Conference, September 7th-9th, Bally’s Hotel in Las Vegas. CME credits will be available, so bring your favorite medical providers. Registration details, including prices, will be available soon. We will post Registration details on our site when they are available. We will […]

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Dr. Tinkle Edits EDS Special Supplement for American Journal of Medical Genetics

Posted on March 18, 2017

Dr. Tinkle Edits Ehlers-Danlos Sydrome Special Supplement for American Journal of Medical Genetics.   Dr. Tinkle also served as an author / co-author for one-third of the papers in the supplement: The Ehlers-Danlos Syndromes: Reports from the International Consortium on the Ehlers-Danlos Syndromes PRZen / CHICAGO — Left Paw Press congratulates Dr. Brad T Tinkle […]

Read More

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Testimonials

  • Thank you John, your daughter Deanna and your darling wife who ultimately lost her life. You are the real heroes for sharing this information and getting it out there. We appreciate you and your daughter for being such fantastic advocates of this horrible illness.

    - Jane

  • We do like your webinars which are freely available on youtube after the live session ends. And that is so kind and generous of you. I do live here in Pakistan and I am a young physician with a mast cell activation disorder (not EDS) and I find tremendous help whenever I watch your wonderful webinars. Thank you for the wonderful work that you. And we do regularly watch your youtube videos here in Pakistan.

    - Magan from Pakistan

  • Thank you all of your years of help and support!

    - Marsha – Austin EDS Support Group

  • What an amazing resource for people with all sorts of chronic pain syndromes and diseases!  I think this is wonderful site for people who have disabilities.

    - Tara

  • Thank you for your dedication and selflessness. You make lives brighter and hearts more full. While we may need to rely on braces to physically support our joints, it is your support that has kept so many from crumbling physically and emotionally. Your tireless efforts reach farther and deeper than you could know. Thank you.

    - Alexandra B. from Ohio

Upcoming Events

Music for Ehlers-Danlos Syndrome Hope Benefit Concert

April 30, 2017

4:00 pm EST

Location: Northern Hills Synagogue 5714 Fields Ertel Road Cincinnati,...Read more...

Ehlers-Danlos Syndrome Awareness for a Cure

June 3, 2017

Come join us!

Hoofbeats 5K 2017 Saturday June 3, 2017 9:00 AM...Read more...

See all upcoming events

Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 652 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,311

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