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
10:44
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
21:42
2023 vEDS Collaborative Natural History Study & Splenic Arteriopathy in vEDS - Sherene Shalhub
08:25
2023 iPSC in musculocontractural EDS - Dr. Tomoki Kosho
13:06
2023 A Clinical Diagnosis of Rare EDS Without Genetic Cause - What Next? - Dr. Fleur van Dijk
11:52
2023 Preimplantation Genetic Testing in Genetically Defined Types of EDS - Dr. Chloe Angwin
18:44
2023 Variants of Unknown Significance - Dr. Marco Castori
11:04
2023 Understanding the psychosocial issues faced by children with classical EDS - Ruth Nicholson
10:06
2023 Experience of Adults with cEDS - Margaret Warren-Perry
21:14
2023 Psychosocial Aspects of Living with a Genetically Defined Type of EDS
10:17
2023 Non-accidental injury investigations in patients w/ subsequently confirmed rare types of EDS-
07:42
2023 EDS Society Centers and Networks of Excellence - Dr. Clair Francomano
09:41
2023 Handle with Care! Physical Therapy For Genetically Defined Types of EDS - Nina Riise
17:45
2023 Cardiovascular Manifestations and Follow-up in Adults - Michael Frank
16:38
2023 Handle with Care! Physical Therapy For Genetically Defined Types of EDS - Lies Rombaut
21:01
2023 Considering physical therapy modalities with the highly sensitive patient - Dr. Patricia Stott
23:29
2023 Daily Accessible Movement - Finding Movement For The Body You Have Today - Dr. Aiko Callahan
20:19
2023 Posture Alignment Using the Alexander Technique for Hypermobility - Ann Rodiger
25:20
2023 Pain Management in EDS & HSD - Dr. Shilpa Gajarawala
26:05
2023 Help Me Trust You After My Misdiagnosis - Sarah Clark
26:06
2023 Open communication with partners and providers on the subject of sex - Martha Wiggin
23:23
2023 - Setbacks and Superpowers of people with chronic complex overlapping disorders
25:56
2023 - Menstrual Health and Contraception in Adolescents and Young Adults living with EDS/HSD
39:47
2023 - EDS, HSD & the GI tract - Prof. Qasim Aziz
22:52
2023 Migraines Are Not Bad Headaches - Helen Spriggs
29:20
2023 Integrating Holistic Nutrition Strategies to Manage Upper/Lower GI Symptom Flares - Lorna Ryan
24:08
2023 Managing your Diet in Social Settings - Laurie Bilyeu
23:12
2023 Pitfalls of a Restrictive Diet - Lorna Ryan
18:33
2023 Deconditioning - How To Appropriately Recondition The Hypermobile Body - Dr. Derik Anderson
22:50
2023 How to make sense of a variant of unknown significance - Prof. Fransiska Malfait
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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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