Upcoming and Previous Webinar Speakers

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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”

    Learn More

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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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    Brad T. Tinkle, M.D., Ph.D

    “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”.

    Learn More

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    Cynthia Allen, GCFP, STMI

    “The Feldenkrais Method and other Somatic

    Learn More

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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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    Howard R. Epps, MD

    “Orthopaedic Considerations in EDS”

    Learn More

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    Dr. Jan Dommerholt

    “Physical Therapy for Ehlers-Danlos”

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    Dr. Henry Burkholder

    “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”

    Learn More

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    Dr. Peter Byers

    “Vascular Ehlers-Danlos Syndrome / EDS type IV”

    Learn More

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    PRESENTER:   Subinoy Das, MD, FACS, FARS  Click here for a link to the announcement page

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    PRESENTER:   Frank Gargano PT, DPT, OCS, CIDN, MCTA, CWT Click here for a link to the announcement page

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    PRESENTER: Diana Lebron, MD     Click here for a link to the announcement page

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    PRESENTER: Shweta Dhar, MD, MS, FACMG Click here for a link to the announcement page

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    Presenter: Kathleen Kane, ESQ   Click here for a link to the announcement page

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        Presenter Dr. Richard Barnum   Click here for a link to the announcement page

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    PRESENTER:  Dr. Anne Maitland Click here or a link to the announcement page

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    Presenter: Alan Pocinki, MD   Click here for a link to the announcement page

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    Presenter: Derek Neilson, MD Click  here for a link to the announcement page

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    Presenter: Dr. Peter Rowe   Click here for a link to the announcement page

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    Presenter: Professor Joel Lamoure, RPh  Click here for a link to the announcement page

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    Presenter: Eric Palmer,  Orthotist Click here for a link to the announcement page

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    Presenter: Dr. John Mitakides Click here for a link to the announcement page

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        Presenter: Dr. Staci Kallish Click here for a link to the announce page  

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      Presenter: Pradeep Chopra, MD Click here for a link to the announcement page

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        Presenter: Dr. Golder Wilson Click here for a link to the announcement page Video link is on this page

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

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        Presenter: Ken Goldschneider,  MD 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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      Presenter: Michael Holick, MD Click here for a link to the announcement page. Video link is on this page

    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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Living with Ehlers-Danlos syndrome – Safety Tips

Posted on December 5, 2016

Ellen has been an advocate for those with Ehlers-Danlos Syndrome and has been a great resource for the EDS community. By Ellen Lenox Smith, Columnist Living with Ehlers-Danlos syndrome (EDS) is a lifelong process that requires constant monitoring on how to remain active, yet also physically secure and safe. EDS is a condition that leads […]

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Craniosacral Therapy and Ehler-Danlos Syndrome

Posted on December 2, 2016

By: Eloise Stager, BA, LMT, CST   Introduction Ehlers-Danlos Syndrome (EDS) is a genetic, connective tissue disorder affecting collagen production. Since collagen is found throughout the body, all systems, structures and biomechanics can be affected. The most noticeable physical manifestation is joint hypermobility as described by the Beighton Criteria (6), a scoring system for joint hyperflexion […]

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The Hidden Struggles of Living with Ehlers-Danlos Syndrome

Posted on November 21, 2016

Katelyn Verstraten, Online Reporter.   Ehlers-Danlos Syndrome is just one of many invisible illnesses that dramatically alter the course of the patient’s life. At 18, Catherine Richardson’s life was all planned out: she was getting amazing grades in her first semester of university, pursuing her dream of being an occupational therapist, and working part-time as […]

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What I Now Understand About My Mom’s Ehlers-Danlos Syndrome

Posted on November 11, 2016

Alexandra is the leader of the Morristown NJ EDS Support group. I was diagnosed with Ehlers-Danlos syndrome after an eminent radiologist in the UK, Professor Smith, saw bulging discs all down my mid-spine, which is very rare, herniated and bulging discs in my neck and signs of ligamentous laxity at the craniocervical junction. Back in […]

Read More

More Articles

Testimonials

  • Thank you so much for your post!

    Your wife’s struggles mirror my own in so many ways.

    My daughter was diagnosed with EDS almost a decade ago, but the doctor’s in the area considered it a ‘non-illness’, gave us zero information, & zero help.

    As both our healths deteriorate, I’m back to looking for answers, solutions, or even  just ideas & direction.

    You’ve given me a cohesive way to explain the symptoms to the rhumatologist I go see next month.

    THANK YOU!!!!

    - Dawn F.

  • Your website has a wealth of information and we have watched quite a few of your webinars.  You and Deanna are doing a wonderful service!

    Thank you, again,

    God bless.

     

    - Carol from Hawaii

  • Dr. Pocinki’s webinar has given me HOPE! and the next webinar ties right in with everything I have gone through, so I just wanted to say a special thank you for putting these webinars out there for those of us in search of answers.

    I hope and pray I can bring these answers back to my Psychiatrist at Tuft’s and my other Physicians, especially if I I’m successful in getting relief from my symptoms, and help to raise awareness of EDS & POTS to help others.

    You & your Team are a blessing – please keep up the good work for us Zebras! I really appreciate all of your efforts. God bless you!

    - Leah from MA

  • Hi John, My daughter Elisabeth has EDS and we’ve attended some of your webinars. Thank you so much for providing this valuable service! We’ve both learned something new from every single speaker.

    - Trisha from PA.

  • Thank you for having the seminars. They are most informative.
    I am teaching on Tuesday afternoons, but I will try to attend all Tuesday evening seminars.

    Again, thank you.

    - Dr. Stalvey from South Carolina

Upcoming Events

Wellapalooza Events – November 4 – 11, 2016

November 4, 11, 2016

8:00 AM

  Click here for more details Start:   November 4...Read more...

2016 Holistic Health Symposium

November 4, 5, 2016

6:30pm - 8:30pm, 8:00am - 3:30pm

An Exciting Opportunity to Learn from Five Leading Experts...Read more...

See all upcoming events

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