04:08
Celebrating 5 Years of EDS ECHO
55:17
'Conversations With' Series: Accessing care as a 2SLGBTQIA+ individual
19:13
2021 Visceral Arteries in vEDS - Dr. Amani Politano
18:35
2021 The Aorta and Iliac Arteries Pathology in vEDSÂ - Dr. Sherene Shalhub
19:01
2021 Family Planning, Anticipating & Managing Pregnancy Complications - Dr. Melissa Russo
15:34
2021 Carotid, Vertebral, and Subclavian Arteries in vEDS - Dr. John Westley Ohman
16:37
2021 What My Toolbox Looks Like, And How You Could Build Yours - Katie Wright
20:02
2021 Outpatient Medical Management in vEDS - Dr. Fleur Van Dijk & Dr. Glenda Sobey
12:42
2021 Gene Modifiers Loci Associated to Colonic Perforation - Dr. Xavier Jeunemaitre
14:38
2021 Migraine in vascular EDS - Dr. Manjit Matharu
08:29
2021 Ambulatory BP Study - Dr. Siddarth Prakash
10:46
2021 Genetics and Molecular Biology in vEDS - Dr. Lauren Puryear
09:40
2021 Natural History Study Update - Dr. Stephanie Wallace
16:21
2021 Psychosocial Issues in Patients Living With vEDS - Leanne Barrett
09:28
2021 Intestinal Emergencies in vEDS - Dr. Jessica A. Zagory
21:26
2021 Interpreting the Genetic Testing Report - Dr. Duncan Baker & Dr. Neeti Ghali
13:05
2021 School Adaptations for vEDS - Jared Griffin
31:10
2021 Managing Lumbar Instability - Dr.Russek
33:40
2021 Peripheral Neuropathy - Dr. David Saperstein
23:46
2021 Persistent Headache and Migraine - Dr. Salwa Kamourieh
33:26
2021 Orthostatic Headache - Dr. Manjit Matharu
19:55
2022 Autoimmune Rheumatic Disease and Ehlers-Danlos Syndromes - Dr. Clair Francomano
15:31
2022 Coping with the Challenges and Fears of MCAS - Courtney Rabb
25:11
2022 Immune Dysfunction in HSD and EDS: Beyond Mast Cell Activation Disease - Dr. Anne Maitland
46:27
2022 Our Immune System - Dr. Anne Maitland
30:53
2022 Disorders of Mast Cells and Mast Cell Activation - Dr. Mariana Castells
31:19
2022 Inflammation, Pain, and Urogynaecological Disorders - Prof. Vik Khullar
09:56
2022 How to Talk to Your Physician and Make the Most Out of Your Doctor Appointments! - Valerie Slee
01:05:33
2023 The Princess and the Pea - Sleep, Sleep Apnea and Hypermobility Syndromes - Kateri Champagne
35:53
2023 Fatigue - The Complex Interplay Between Physical and Mental Health - Dr. James Kustow
25:04
2023 Fatigue in Headache Disorders - Prof. Manjit Matharu
10:10
2023 Pacing, Exercise and Managing Daily Activities: Tips from a Community Voice Perspective
25:53
2023 Chronic Pain and Fatigue - Dr. Helen Cohen
32:38
2023 Dysautonomia, Physical Health and Fatigue - Dr. Peter C. Rowe
12:29
2023 Introduction to Fatigue in EDS and HSD - Dr. Alan Hakim
36:00
2023 Fatigue in EDS: An Overview of Causes, Assessment, and General Principles of Management
32:01
2023 Nutrition and Fatigue - Lorna Ryan
31:57
2023 Pacing, Exercise, and Managing Daily Activities - Emily Rich
27:40
2023 Mast Cell Disorders, Inflammation, and Fatigue - Dr. Anne Maitland
08:37
2023 Community Voice: Mikaila Delgado
04:56
2023 'I'm Not Just Tired' - Tara Rule
10:43
2023 Living with hEDS and HSD: POTS - Francie Fitzgerald
12:44
2023 Living with hEDS and HSD: Pain - Maggie Buckley
23:44
2023 Treatment: Gastrointestinal (GI) Issues - Dr. Isabelle Brock
11:26
2023 Treatment: Adaptive Aids & Devices to Help with Symptoms - Mars Lombardi
09:29
2023 MCAS Treatment â Addressing Unmet Needs - Scarlett Eagle
08:57
2023 Diagnostic Odyssey: MCAS - Danielle Vaccaro
11:28
2023 Treatment: Pain, An Integrated Approach - Dr. Cortney Gensemer, PhD
14:59
2023 An introduction to the Diagnostic Odyssey - Dr. Colin Halverson
17:52
2023 Introduction on Living with hEDS and HSD - Dr. Alan Hakim
13:42
2023 My Diagnostic Journey - from Both Sides of the Stethoscope - Dr. Brianna Cardenas
06:26
2023 Welcome to the Patient-Focused Drug Development Meeting - Dr. Cynthia Rothblum-Oviatt
08:16
2023 Introduction on hEDS and HSD - Dr. Clair Francomano
06:35
2023 Living with hEDS and HSD â MCAS - Courtney Rabb
09:06
2023 Diagnostic Odyssey: Hypermobile Ehlers-Danlos Syndrome (hEDS) - Emily Rubenstein
14:52
2023 Living with hypermobile Ehlers-Danlos syndrome (hEDS) and GI Issues - Harry Radcliffe
15:14
2023 Unmet Needs and Challenges for Patients/Families Living with Genetically-Defined EDS
09:40
2023 EDS & Relationship Functioning - Sabine Hellemans
16:45
2023 Organization of the Rare Disease Program for Musculoskeletal Diseases in Hungary
18:04
2023 Patient Advocacy Toolkit for People with vEDS - Dr. Juliette Harris
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About
The Ehlers-Danlos Society is the global nonprofit organization dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions.
Our goals are world-wide awarenessâand a better quality of life for all who suffer from these conditions. Research is at the center of what we do.
Many around the world face a diagnostic odyssey: years, sometimes lifetimes, fighting for recognition, diagnosis, and care. We are working towards a time when geography and wealth no longer determine your quality of life. Education is needed to advance early diagnosis and interventionâand post-diagnosis, patients urgently need support and guidance. We want to give hope to all those living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders. Visit ehlers-danlos.com
Any medical information found here should be discussed with your doctors thoroughly before taking action.
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