Educational Programs and Newsletter

by EDSawareness.com / ChronicPainPartners.com Staff

EDS Educational Programs

Our goal is to Connect, Support and Educate patients, caregivers and professionals on EDS/HSD through our webinars, continuing education courses and other activities. 
 
We offer free webinars to educate our members and the EDS Community.
 
 
Anyone (worldwide) can attend online programs 7/24 and if needed can receive CME, CEU and CNE.
 
We are now accredited to provide 7/24 CNE for Nursing.
 
We conducted an EDS Leadership Conference with Mandy Harvey in 2019 to train Advocates, Support Group and Facebook leaders.
 
We are also offering new Patient Guides on all topics around EDS, such as CCI, applying for disability and more. 
 
Additionally, we are now producing professional video content, such as our educational video series EDSed, films on EDS (We Are Visible and We Are Visible Too) and many more. 
 
 

EDS Awareness newsletters:

Our monthly newsletter, the Chronic Pain Partners Post, features articles by and for the EDS community and highlights people with EDS and other chronic illnesses and disabilities every month.
 
 
Just click on the months below for previous newsletters:
 

2021

 
 
 
 
 
September 2021
 
October 2021
 
 
Holiday Special with Gift Ideas and Book and Documentary recommendations for the holidays. 
 

2022

 
Review of Jeannie Di Bon’s Zebra Club App
 
EDS & Aging Project
 
Meghan O’Rourke & The Invisible Kingdom
Interview with Dr. Linda Bluestein about her new educational program for people with EDS
 
EDS & Caregiving: an interview with two caregivers
 
Expert opinion: Dr. Chopra on psych issues & EDS
Interview with Dr. Chopra re. the psychological and psychiatric aspects of the Ehlers-Danlos syndromes
EDS is not all in the head – an essay by John Ferman
Adrienne Ferron on challenges as a woman of color with EDS
Brianna Cardenas, PA-C, ATC, on challenges as a queer woman of color with EDS
 
Interview with the Norris Lab on finding the cause(s) of hEDS
Interview with Donna Sullivan, TCAPP, about wrongful child abuse allegations and medically complex children
Jack Briar Pollock on challenges of being trans with EDS
Kaleena Deshawn on challenges as a person of color with EDS, Fibromyalgia and ME/CFS
Jules Machias about their EDS journey and new middle-grade book “Fight + Flight”
 
Cassandra Campbell on finding acceptance as a person with EDS
Archer Young about navigating health care as a trans man with EDS, transitioning, and studying with EDS
Ehlers-Danlos Syndromes, gynecological complications & sexual health
 
Suicide Prevention Month Special: April Torres on her EDS journey, the mental toll it took on her, and her book & Suicide Prevention Month Q&A with Dr. Delaney and PA Sarah Cook about coping strategies and how to support people with chronic illnesses
Book Review: “Fight + Flight”, the new middle-grade book featuring a character with EDS
 
Where physical therapy ends and magic begins: Healy Physical Therapy and Sports Medicine 
Author Christie Cox about her new EDS book ‘Holding It All Together When You’re Hypermobile’
The Sextacular EDS Zebra Group: An interview with admin Mary Cordaro
EDS & Caregiving: An interview with Alice Agyemang, professional full-time caregiver
 
We Are Visible (Too), Episode 1: Sarah Rightmire
Book Review: Holding It All Together When You Are Hypermobile 
Chronic Illness Advocate Brianne Benness about her EDS journey and #NEISVoid
 
Holiday Special: The 12 Gifts of Blissmas: This Holiday Season’s Gift Guide for the EDS Warrior & EDS Holiday Hacks: Twelve Tips for Setting Yourself Up for Success by Realigning Your Expectations
EDSed Episode 1: The Norris Lab
Para climber Anoushé Husain on “believing in the impossible”, her cancer diagnosis, EDS journey, and the sports she loves
 
 

2023

Surviving the Rollercoaster of EDS and Chronic Fatigue: Tips and Tricks for Managing the Boom-and-Bust Cycle
Mitch Martow on his EDS journey and the documentary Bend or Break
Advocate Nthabeleng Ramoeli on her EDS journey, EDS care in Lesotho, and why she established an NGO to help all rare disease patients
Author Jessica MacLean on how writing saved her and what she learned from her ancestors
 
EDSed Episode 2: Dr. Lilian Holm on Physical Therapy & EDS
Small Fiber Neuropathy is a Common Feature in Hypermobile EDS, Research Finds
Wrap Yourself in a Blanket of Love: How to Foster Self-Compassion
 
Surgery Prep: Meeting your EDS hospital stay needs (including an ebook you can download and bring to your appointments!)
Book Review of a children book called the Bendy Twisty Zebra
School Accommodations Series: Guest Blog by Avi Zahavi about her daughter’s struggles to get the right accommodations
EDSed, Episode 3 with PT Elan Schneider on Neuroplasticity and how it can be used for chronic pain management. This video is also available as text-based article. 
 
Two Students Share How To Navigate School With EDS
Researchers Found New Possible Gene For HEDS
Kimby Maxson and The Bendy Twisty Zebra
Parental Preparation for Securing Accommodations at K-12 School for Children with the Ehlers-Danlos Syndromes
New Cervical Spine Instability Publication: The Authors Explain Their Findings
AI Meets Medicine: Can ChatGPT Unlock Answers to Your Medical Questions?
Cervical Spine Instability Patient Guide (and ebook)
 
Folate-Dependent Hypermobility: Researchers at Tulane’s EDS Clinic Look Into New Possible Mechanism For Hypermobile EDS
 
 
We Are Visible Too, Episode 2: Caitlin O’Donnell
Filmmaker Suri Ellerton, Her EDS Journey & New Film Highlighting The Challenges Of Disabled Parents
New Netflix Documentary ‘Take Care of Maya’ Highlighting Wrongful Child Abuse Allegations
Win Your EDS Disability Claim: A Zebra’s 12-Step Basic Training Bootcamp
The First Steps of Medicine: Unraveling S.O.A.P. Notes from a First-Year Medical Student
Bendy Bones and Stretchy Skin: An Ehlers-Danlos Book
 

December 2023

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Upcoming and Previous Webinar Speakers

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    Ross A. Hauser, MD
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    Presenter: Jeannie Di Bon   MA PMA-CPT
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    Presenter: Dr. Eli Penn
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    Pradeep Chopra, MD
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    “The Role of CranioSacral Therapy in
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    Anne Maitland, M.D., Ph.D
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    Clair Francomano MD
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    Podcast Interview with Karina Strum
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    Andrea Julian
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    Alan G. Pocinki M.D.
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    Ross A. Hauser, MD
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    Jeannie Di Bon. MA, PMA-CPT
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    Patrick Agnew DPM
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    Susan Tran, PhD
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    Paolo A Bolognese, MD
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    Lauren Stiles, JD
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    Jordan Tishler, MD
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    Jeannie Di Bon, MA, PMA-CPT
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    John Ferman
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    Anne Maitland, MD, PhD
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    Joshua Milner, M.D.
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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

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    John Ferman and Deanna Hamm

    “World-Wide EDS Survey Results” by EDS Awareness
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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

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

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    Dr. Holly Gilmer

    “Chiari Malformation in EDS”

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    Dr. Blair Grubb

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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

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    Dr. Petra Klinge

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    Kelly Clancy, OT

    “New and Emerging Manual Therapy Approaches for EDS”

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    Dr. Clive Bridgham

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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

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    Dr. Joan Stoler

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    John Ferman

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    Dr. Patrick Agnew

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    Dr. Theoharis Theoharides

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    Dr. Brad Tinkle

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    Cynthia Allen, GCFP, STMI

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    Dr. Mark E. Lavallee

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    John Ferman

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    Dr. Howard R. Epps

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    Jan Dommerholt, DPT

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    Dr. Henry Burkholder

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    Dr. Peter Byers

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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

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    Shweta Dhar, MD, MS, FACMG

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    Dr. Richard Barnum
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    Dr. Anne Maitland
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    Dr. Alan Pocinki
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    Dr. Derek Neilson
    “Proving the obvious: Next Steps for the Demystification
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    Dr. Peter Rowe
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    Prof Joel Lamoure, RPh., DD., FASCP
    “Medical Psychiatry in Pain Management”

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    Eric Palmer, Orthotist
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    Dr. John Mitakides
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    Dr. Staci Kallish
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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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