Channel Title: The Ehlers-Danlos Society Channel Description: The Ehlers-Danlos Society is a global organization dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD. Our vision is to create a world in which each person living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders has the right treatment and care at the right time for their specific needs. Find support and information at ehlers-danlos.com Any medical information found here should be discussed with your doctors thoroughly before taking action. <video> 2021 Family Planning, Anticipating & Managing Pregnancy Complications - Dr. Melissa Russo Description: This presentation is from the 2021 EDS ECHO Summit: Vascular Ehlers-Danlos Syndrome (vEDS). vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing: https://www.ehlers-danlos.com/what-is-eds/vascular-ehlers-danlos-syndrome-veds/ Melissa L. Russo is a specialist in maternal-fetal medicine (high-risk obstetrics) and clinical genetics. She currently works at Women and Infants Hospital, an affiliate of Warren Alpert Medical School at Brown University in Providence, Rhode Island. She pursued her residency in obstetrics and gynecology and fellowship training in maternal fetal medicine and clinical genetics at Johns Hopkins University School of Medicine in Baltimore, Maryland. Her current research is focused on the effects of pregnancy on the risk for aortic dissection, determining the risk factors for aortic dissection in pregnancy, and better characterizing obstetrical and cardiovascular outcomes for the mom and fetus during pregnancy. Her goals are to 1) empower women with these disorders with knowledge to allow them to make decisions and advocate about their reproductive choices and care during pregnancy and 2) educate health care providers on recognition and management of these disorders in pregnancy. </video> <video> 2021 Visceral Arteries in vEDS - Dr. Amani Politano Description: This presentation is from the 2021 EDS ECHO Summit: Vascular Ehlers-Danlos Syndrome (vEDS). vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax. https://www.ehlers-danlos.com/what-is-eds/vascular-ehlers-danlos-syndrome-veds/ Dr. Politano is a Vascular Surgeon at OHSU, in Portland, OR. Originally from Virginia, where she completed her medical school, surgery residency, and vascular surgery fellowship, she moved to Oregon with her husband and faithful border collie. </video> <video> Celebrating 5 Years of EDS ECHO Description: In a world where rare and complex diseases often struggle to find a voice, the EDS ECHO program stands as a beacon of success. As we celebrate its 5th anniversary, we reflect on a journey that began in April 2019, transforming education and care for Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) globally. EDS ECHO was established to address the need for specialized knowledge and care strategies for often misunderstood EDS and HSD conditions. Using the Project ECHO® model’s “all teach, all learn” philosophy, it aims to move knowledge, not people, creating a scalable impact on health. This model fosters collaboration, empowering healthcare professionals to enhance their skills while maintaining patient care responsibility. Starting with two hubs at Indiana University Health, Indianapolis, USA, and The Royal Society of Medicine, London, UK, EDS ECHO expanded globally, attracting healthcare professionals from all disciplines. Through case-based discussions and sharing of the latest knowledge, EDS ECHO has fostered a rich learning environment, encouraging professional growth, networking, and collaboration. From its inception, EDS ECHO broke new ground as the first Rare Disease ECHO, the first to offer ECHO Events, and the first to offer an Advocacy ECHO, laying the foundation for a global educational movement. Over five transformative years, the program has provided 847 CME (Continuing Medical Education) credits, demonstrating its commitment to continuous education and professional development. Learn more about this transformative educational program: https://www.ehlers-danlos.com/educating-empowering-and-expanding-horizons-celebrating-five-years-of-eds-echo/ </video> <video> The Ehlers-Danlos Society 2024 Global Learning Conference Description: Thank you for an incredible Global Learning Conference in Philadelphia, Pennsylvania, USA. From July 17-21, 2024, The Ehlers-Danlos Society brought together a diverse community of advocates, medical professionals, and individuals impacted by Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), both in person and virtually from all around the world. The conference theme was ‘EDS and HSD: From Head to Toe’ covering information and management strategies for symptoms and comorbidities affecting every aspect of life in EDS and HSD.⁠ Throughout the conference, we were joined by 2,206 people in 39 countries. Of those, 60% were first-time attendees to an Ehlers-Danlos Society conference! We had our biggest Junior Zebras program yet, welcoming 75 kids and teens to an incredible program led by Camp Joy. Here's what some of our guests had to say: “The feeling of community, unity, connection, joy walking among my fellow Zebras. Watching the speakers take the time to listen and HEAR the Zebras speaking with them. THE STAFF! You are ALL so amazing and kind. You all SAW ME! I loved that! Thank you all for your knowledge, time, kindness and support!” “Where to begin! I have 17 pages of notes I need to review and follow up. I have a gazillion tabs open on my laptop for specific speakers and/or concepts. The main feeling is that I can take charge of my health and that there are options. I am eager to learn more about fascia, craniosacral therapy, pelvic vascular issues, exergaming, reduction of MCAS, and so so so much more. I feel like I have leveled up AND have hope for less pain and fatigue in my future.” “Thank you so much for a wonderful conference!! And thank you for such a user-friendly process to obtain CME credit. I appreciate the conference incorporating CME into the main event.” “I've been to several learning conferences, and I have to say this was the most laid-back and enjoyable conference I've attended. The amount of information provided on the content was just phenomenal.” “Endless information, I learned something new for every part of the body!” “Thank you SO much for putting on such comprehensive conference! I was just diagnosed this year so I learned a ton of information.” “I learned everything new and valuable at this event. My symptoms are relatively mild, so I have no specialists for EDS-related problems. I didn't know much about any of the topics covered. The event was incredibly helpful.” “100% connected all my symptoms from the past 35 years and gave me resources to take to my doctor for official diagnosis!” Join Us At Our Next Global Learning Conference! February 7-9, 2025 The Ehlers-Danlos Society is delighted to announce our 2025 Global Learning Conference in Brisbane, Queensland, Australia! We will be hosting this exciting hybrid event, both in-person and virtually. Join individuals and families with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) for three days of learning, collaboration, and networking. The conference theme is “Teamwork” and will feature presentations, case studies, and panel discussions led by experts on the management of symptoms and comorbidities in EDS and HSD, focusing on the importance of multidisciplinary team collaboration. The event is suitable for community members and their friends and families, as well as healthcare professionals. Registration is now open. Click here to register today! https://www.ehlers-danlos.com/events/2025-global-learning-conference/ </video> <video> Making a difference for EDS and HSD — Thank you 2024! Description: Imagine a world where EVERY person with EDS and HSD gets the care they need to thrive! 🌟⁠ ⁠ At The Ehlers-Danlos Society, we are committed to making this vision a reality. And now's your chance to DOUBLE your impact - every donation is matched for a limited time! 💜 ⁠ ⁠ Thanks to a generous donor, every donation made by December 31 will be matched dollar for dollar, up to $400,000! Your contribution fuels initiatives that truly change lives. ⁠ ⁠ In 2024, your support has enabled us to: 🤝 Provide critical care and support through our helpline and virtual groups, offering hope when it’s needed most.⁠ ⁠ 🌍 Accelerate groundbreaking research to unlock better treatments and diagnostic tools.⁠ ⁠ 📚 Educate healthcare professionals worldwide so they can recognize and treat Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) better.⁠ Together, we are making a difference. Donate today and help this vital work continue in 2025 and beyond: https://www.ehlers-danlos.com/donate/ Find support at www.ehlers-danlos.com </video> <video> 2021 Gene Modifiers Loci Associated to Colonic Perforation - Dr. Xavier Jeunemaitre Description: This presentation is from the 2021 EDS ECHO Summit: Vascular Ehlers-Danlos Syndrome (vEDS). vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax. https://www.ehlers-danlos.com/what-is-eds/vascular-ehlers-danlos-syndrome-veds/ As a Professor in Genetics at Université de Paris (Descartes), Dr. Xavier Jeunemaitre is in charge of the Department of Genetics at the Hospital Pompidou and a research team at the Paris Cardiovascular Research Centre, UMRS-970, Paris France. He has been appointed in 2019 as the Dean of the Faculty of Health of the Université de Paris. His main scientific interests are the genetic determinants of arterial hypertension and cardiovascular disorders, among them vascular Ehlers Danlos syndrome. Dr. Jeunemaitre authored or co-authored more than 300 peer-reviewed articles and chapters books. </video> <video> Equitable Care: Empowering Marginalized Voices in EDS and HSD Description: The Ehlers-Danlos Society was thrilled to welcome an incredible keynote panel to its 2024 Global Learning Conference in Philadelphia, to discuss how to ensure equitable care for all individuals with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), particularly those from marginalized communities. Keynote Panel from left to right: Dr. Akilah Cadet is the Founder and CEO of Change Cadet, an organizational development consulting firm that embeds belonging into company culture and strategy. She is a passionate advocate for dismantling white supremacy and supporting marginalized communities. Dr. Cadet is also a member of The Ehlers-Danlos Society’s board of directors. Sabra Thomas is a patient advocate who has hypermobile EDS. Her journey of self-advocacy began at a young age, and she continues to educate and support others within the EDS and HSD community. Danielle Medina is a disability and rare disease advocate, dedicated to raising awareness about vascular EDS and promoting accessibility in various sectors, including fashion and entertainment. Mars Lombardi is a patient expert, disability justice activist, and current candidate for a Master's in Speech-Language Pathology. Their work includes legislative activism, public health education, and accessible arts education. Professor Lara Bloom, CNE, is the President and CEO of The Ehlers-Danlos Society. Michelle Jalali is the Director of Diversity, Equity, and Inclusion for the NBA Portland Trail Blazers and owner of Jalali Consulting LLC. She is also a member of the Ehlers-Danlos Society’s board of directors. Michelle chaired this incredible panel, emphasizing the need to remove barriers to access and quality care across various demographic groups. </video> <video> 2021 Ambulatory BP Study - Dr. Siddarth Prakash Description: This presentation is from the 2021 EDS ECHO Summit: Vascular Ehlers-Danlos Syndrome (vEDS). vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax. https://www.ehlers-danlos.com/what-is-eds/vascular-ehlers-danlos-syndrome-veds/ Siddharth Prakash has a Ph.D. in Molecular and Human Genetics from Baylor College of Medicine, where he also completed his residency in Internal Medicine and a fellowship in Cardiovascular Disease. Since 2011, Dr. Prakash has worked in the John Ritter Research Program in Aortic and Vascular Diseases at McGovern Medical School, a part of the University of Texas Health Science Center at Houston (UTHealth), where he specializes in medical therapy, imaging and surveillance of patients with heritable aortic and vascular diseases. He is Associate Professor of Internal Medicine and is co-director of the Turner Syndrome Adult Comprehensive Care Center. </video> <video> 2021 The Aorta and Iliac Arteries Pathology in vEDS  - Dr. Sherene Shalhub Description: This presentation is from the 2021 EDS ECHO Summit: Vascular Ehlers-Danlos Syndrome (vEDS). vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax. https://www.ehlers-danlos.com/what-is-eds/vascular-ehlers-danlos-syndrome-veds/ Dr. Shalub's work aims to provide high-quality care to patients suffering from rare vascular conditions such as vEDS. Her goal is to improve success of surgical repair and long-term survival for these high-risk patients while maintaining an excellent quality of life in a manner that is in line with their priorities and personal values. </video> <video> 2021 What My Toolbox Looks Like, And How You Could Build Yours - Katie Wright Description: This presentation is from the 2021 EDS ECHO Summit: Vascular Ehlers-Danlos Syndrome (vEDS). vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. Katie was diagnosed with VEDS in 2017 and first became involved in advocacy for VEDS with a YouTube channel, a podcast, and the VEDS Collaborative. </video> <video> 2021 Genetics and Molecular Biology in vEDS - Dr. Lauren Puryear Description: This presentation is from the 2021 EDS ECHO Summit: Vascular Ehlers-Danlos Syndrome (vEDS). vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax. https://www.ehlers-danlos.com/what-is-eds/vascular-ehlers-danlos-syndrome-veds/ Lauren Puryear is a Genetic Counselor and Clinical Assistant Professor at the University of Washington Medical Center. She provides genetic counseling to patients for a variety of indications and has a particular interest in vascular Ehlers-Danlos syndrome and other connective tissue disorders. </video> <video> 'Conversations With' Series: Accessing care as a 2SLGBTQIA+ individual Description: In this new 'Conversations With' episode, Lara Bloom, President and CEO of The Ehlers-Danlos Society, joins Stevie Boebi, Annie Segarra, and Elliot Pippin to talk about accessing care as a 2SLGBTQIA+ individual. Ryder Richard was due to join us but sadly couldn't make it due to health issues - we hope to speak with you soon Ryder!⁠ 2SLGTBQIA+ is an acronym for Two-Spirit, Lesbian, Gay, Bisexual, Transgender, Queer and/or Questioning, Intersex, Asexual, and the plus reflects the countless affirmative ways in which people choose to self-identify. The discussion features personal stories, highlighting the challenges in obtaining diagnoses, the role of self-advocacy, and queerness, neurodivergence, and EDS and HSD. The importance of social media and community for support and resource sharing, and the need for greater accessibility in queer spaces are key topics. Meet Our Guests: Annie Segarra @theannieelainey is a dedicated activist, content creator, and a proud member of the LGBTQ+ community. Living with Ehlers-Danlos syndrome, she is well-known for her advocacy work in disability rights, body positivity, and social justice, using her engaging videos and insightful discussions to raise awareness. With a powerful voice and a commitment to inclusivity, Annie strives to make the world a more accepting and accessible place for everyone. Her work continues to challenge norms, celebrate diversity, and inspire meaningful change, particularly in the realm of chronic illness and disability activism. Elliot Pippin is a 25-year-old Social Media Engagement Manager based in Pittsburgh. Diagnosed with hypermobility spectrum disorder (HSD) this year, Elliot has become a fierce advocate for accessibility and inclusivity. Elliot’s professional expertise in social media engagement shines through his innovative strategies to amplify marginalized voices and build robust, supportive networks. Whether crafting unique creations, biking through Pittsburgh's scenic trails, or organizing community care initiatives, Elliot embodies a commitment to making the world a more inclusive and connected place. @stevie Boebi is an international queer peer educator who started out on YouTube in 2010, creating the first sex education video series. Her content ranges from ‘how-to’ style tutorials to vagina ring life with Ehlers-Danlos syndrome. Her videos are accessible, entertaining, and desperately needed. Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic, and invisible diseases, specializing in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD), and related disorders. </video> <video> 2021 Migraine in vascular EDS - Dr. Manjit Matharu Description: This presentation is from the 2021 EDS ECHO Summit: Vascular Ehlers-Danlos Syndrome (vEDS). vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing: https://www.ehlers-danlos.com/what-is-eds/vascular-ehlers-danlos-syndrome-veds/ Dr Manjit Matharu is an Associate Professor at UCL Queen Square Institute of Neurology and Honorary Consultant Neurologist at The National Hospital for Neurology and Neurosurgery, London, UK. He is the Clinical and Academic Lead of the Headache and Facial Pain Group at The National Hospital for Neurology and Neurosurgery and UCL Queen Square Institute of Neurology, respectively. </video> <video> 2021 Outpatient Medical Management in vEDS - Dr. Fleur Van Dijk & Dr. Glenda Sobey Description: This presentation is from the 2021 EDS ECHO Summit: Vascular Ehlers-Danlos Syndrome (vEDS). vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax. https://www.ehlers-danlos.com/what-is-eds/vascular-ehlers-danlos-syndrome-veds/ Fleur van Dijk combines patient care and research in her profession as consultant clinical geneticist. She focuses on clinical and genetic aspects of hereditary connective tissue disorders. She leads the national diagnostic Ehlers-Danlos service in London which is a tertiary service aimed at diagnosis and follow-up of people with monogenic types of EDS. </video> <video> 2021 Carotid, Vertebral, and Subclavian Arteries in vEDS - Dr. John Westley Ohman Description: This presentation is from the 2021 EDS ECHO Summit: Vascular Ehlers-Danlos Syndrome (vEDS). vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax. https://www.ehlers-danlos.com/what-is-eds/vascular-ehlers-danlos-syndrome-veds/ Dr. John Westley Ohman is an Assistant Professor in the Section of Vascular Surgery at Washington University School of Medicine. He joined the Section of Vascular Surgery after completing training, where he has a clinical and research practice focusing on the open, endovascular, and hybrid treatment of aortic disease. </video>

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The Ehlers-Danlos Society is a global organization dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD.

Our vision is to create a world in which each person living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders has the right treatment and care at the right time for their specific needs. Find support and information at ehlers-danlos.com

Any medical information found here should be discussed with your doctors thoroughly before taking action.

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