FAQ  (Frequently Asked Questions) —  EDS Support Group Web masters

  1. Why do we recommend only one web master per EDS Support Group?
    1. We want to have consistency in the way the information for your support group is posted on your pages.
    2. We need some accountability for the information that is posted.
    3. You will receive detailed instructions about how to setup and manage your web pages.
    4. Please do not share your username and password with others.
    5. We will set up another username for another member at your request.
  2. Why are there pages on my site for EDSers to “Join” my support group or “Contact” me?
    1. The email address that you provided is set up for you as a “webmaster.” It is the primary method for new members to communicate with you and for you to communicate with your members, after they join your support group.
    2. You can email your members with the links for upcoming meeting announcements, webinars or new postings and they can respond with a reply to your email address.
    3. You can change your email address or password in your “Profile” page
    4. Please do not delete the code in [brackets]. This code creates the form that the user fills out to contact you.
  3. How many pages can I set up for my group?
    1. We encourage web masters to initially use the pages provided for basic information about their support group.
    2. You are free to use these pages to communicate, as long as you follow the criteria in the “Disclaimer” on our edsawareness.com site. Try to keep the content: educational, uplifting, encouraging and helpful to all EDSers.
    3. You can request additional pages for organizing articles, etc. by emailing us at info@edsawareness.com
  4. Why do I see Chronicpainpartners.com when I log in to my site?               
    1. There are plans to have a family of sites to cover other health conditions. This is the top level “family” name.    esdawareness.com is one of the children in the family.
  5. Can I put links, pictures and videos on our EDS support group web pages?
    1. Yes, you can put links, pictures, blogs and videos on your support group web pages.
    2. We suggest that you select pictures, articles, and videos that relate to your local area.
    3. You should avoid videos that last more than 30 minutes. Our experience indicates that typical users will not listen to a video that long.
    4. If you are posting a blog or article that is already on the web, you will need to create a link back to the original article to give the author credit. If you need help with that, let us know.
    5. You are encouraged to add links to your group’s Facebook and other social media sites.
  6. Who do I contact if I need help?
    1. Help is available by emailing info@edsawareness.com.

 We thank you for your efforts to improve the local EDS Awareness in your community.

Get Webinar Announcements And Our FREE Guide

Support EDS Awareness

See all upcoming events

Upcoming and Previous Webinar Speakers

  • webinar-image

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

    Learn More

  • webinar-image

    John Ferman
    Online EDS Physician CME Education

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

    Gisela Chelimsky, MD
    “Hypermobile EDS and Gastrointestinal Issues”

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

    Dr. Marco Castori

    “Multidisciplinary Diagnostic and Management Approach to the EDS Patient”

    Learn More

  • webinar-image

    Professor Claude Hamonet and Dr. Isabelle Brock

    “A French Perspective on Ehlers Danlos”

    Learn More

  • webinar-image

    Dr. Delia Chiaramonte

    “An Integrative Approach to Pain Management”

    Learn More

  • webinar-image

    Dan Doherty — YouScript / Genelex Corp.

    “Pharmacogenetic Testing to Assess Altered Drug Metabolism”

    Learn More

  • webinar-image

    Dr. Alan Pocinki

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

    Learn More

  • webinar-image

    Dr. William Ericson

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

    Learn More

  • webinar-image

    Dr. Norman Marcus

    “EDS & Pain”

    Learn More

  • webinar-image

    Dr. Lawrence Afrin

    “Mast Cell Activation Syndrome”

    Learn More

  • webinar-image

    Diane O’Leary, PhD

    “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients

    Learn More

  • webinar-image

    John Ferman and Deanna Hamm

    “World-Wide EDS Survey Results” by EDS Awareness
    (2544 respondents from 26 countries)

    Learn More

  • webinar-image

    Sara Williams, PhD

    “Cognitive Behavioral Therapy as a Coping Skill for EDS”

    Learn More

  • webinar-image

    Dr. Anne Maitland

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

    Learn More

  • webinar-image

    Dr. Neil Schechter

    “Chronic Pain Hypermobile Children”

    Learn More

  • webinar-image

    Karen Foulks, OTR/CHT
    Jesse Garris, Silver Ring Splint Co.

    “Anatomy and SilverRing™ Splints for Ehlers-Danlos Hands”

    Learn More

  • webinar-image

    Dr. Holly Gilmer

    “Chiari Malformation in EDS”

    Learn More

  • webinar-image

    Dr. Blair Grubb

    “Postural Orthostatic Tachycardia Syndrome (POTs)”

    Learn More

  • webinar-image

    Trish Meegan, DPT, L, ATC

    “Physical Therapy for EDS: Including how your posture and thorax/ribcage affects your PT program”

    Learn More

  • webinar-image

    Dr. Patrick Agnew

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

    Learn More

  • webinar-image

    Dr. Petra Klinge

    “Tethered Cord Syndrome in Ehlers-Danlos”

    Learn More

  • webinar-image

    Kelly Clancy, OT

    “New and Emerging Manual Therapy Approaches for EDS”

    Learn More

  • webinar-image

    Dr. Clive Bridgham

    “Chronic Pain Alternatives – with focus on inflammation and nutrition”

    Learn More

  • webinar-image

    Kevin Muldowney, MSPT

    “Physical Therapy Protocol for Ehlers-Danlos Syndrome” (using the new EDS Physical Therapy Book)

    Learn More

  • webinar-image

    Dr. Mitzi Murray

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

    Learn More

  • webinar-image

    Ellen Lenox Smith

    “Living Life Again with Dignity Using Medical Marijuana”

    Learn More

  • webinar-image

    Dr. Joan Stoler

    “Update on Complications and Rare Forms of EDS”

    Learn More

  • webinar-image

    Jennifer Ortiz, MPT, WSC

    “Physical Therapy for Sexual Dysfunction in EDS”

    Learn More

  • webinar-image

    John Ferman

    “Support Groups for Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. John Mitakides

    “Musculoskeletal Headaches in EDS”

    Learn More

  • webinar-image

    Dr. Patrick Agnew

    “Foot & Ankle Issues with EDS”

    Learn More

  • webinar-image

    Dr. Hal Dietz

    “Connective Tissue Disorder Research”

    Learn More

  • webinar-image

    Dr. Theoharis Theoharides

    “Mast Cell Disorders”

    Learn More

  • webinar-image

    Dr. Brad Tinkle

    “Introduction to Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. Ronald Jaekle

    “Ehlers-Danlos and Pregnancy”

    Learn More

  • webinar-image

    Dr. Manu Sood

    “Gastrointestinal Disorders in EDS”

    Learn More

  • webinar-image

    Dr. Forest Tennant

    “Managing Centralized Intractable Pain in Ehlers-Danlos”

    Learn More

  • webinar-image

    Cynthia Allen, GCFP, STMI

    “The Feldenkrais Method”

    Learn More

  • webinar-image

    Dr. Mark E. Lavallee

    “Exercise is Medicine”

    Learn More

  • webinar-image

    John Ferman

    “Support Groups for Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. Howard R. Epps

    “Orthopaedic Considerations in EDS”

    Learn More

  • webinar-image

    Jan Dommerholt, DPT

    “Physical Therapy for Ehlers-Danlos, Part 1”

    Learn More

  • webinar-image

    Dr. Henry Burkholder

    “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”

    Learn More

  • webinar-image

    Dr. Peter Byers

    “Vascular Ehlers-Danlos Syndrome / EDS type IV”

    Learn More

  • webinar-image

    Subinoy Das, MD, FACS, FARS

    “Sinus Care for Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Frank Gargano PT, DPT, OCS, CIDN, MCTA, CWT

    “Dry Needling for EDS Pain Management: Can muscle performance be improved?”

    Learn More

  • webinar-image

    Diana Lebron, MD

    “Headaches and Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Shweta Dhar, MD, MS, FACMG

    “Coordination of Care in Adults with EDS”

    Learn More

  • webinar-image

    Kathleen Kane, ESQ

    “Applying for Disability”

    Learn More

  • webinar-image

    Dr. Richard Barnum
    “EDS and Psychiatric Illness Misdiagnoses”

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

    Dr. Peter Rowe
    “Managing Orthostatic Intolerance in EDS”

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

    Eric Palmer, Orthotist
    “Bracing for EDS”

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

    Dr. Staci Kallish
    “Cardiac Manifestations in EDS”

    Learn More

  • webinar-image

    “EDS and Pain… Connecting the Dots” Part 2

    Pradeep Chopra, MD

    Learn More

  • webinar-image

    Presenter: Kevin Muldowney, PT Click here for a link to the announcement page Video link is on this page

    Learn More

  • webinar-image

    EDS Pain Management. (Part 1)
    Dr. Pradeep Chopra

    Learn More

  • webinar-image

    Presenter: Michael, Healy, DPT Click here for a link to the announcement page  Video link is on this page

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

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

    Learn More

  • webinar-image

    Presenter: Stephanie Gandomi, MS Click here for a link to the announcement page. Video link is on this page

    Learn More

  • webinar-image

    Dr. Kenneth Goldschneider
    Pain Management for EDS

    Learn More

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%, 653 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,312

Loading ... Loading ...