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.
We relaunched our new, free 7/24 OnlineEDS Healthcare Providers Educational program.
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
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
The Road to Recovery Was Paved By Me and My Wheelchair: Q&A With Ryann Mason
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
Emergency Care Planning for the EDSer
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
School Accommodations Series: 4 Tips on How to Navigate School as a person with EDS
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
When Formal Education with Ehlers-Danlos Syndrome Isn’t Possible: 3 Tips
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
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