The Ehlers-Danlos Society

?? The Countdown to the 2025 International Scientific Symposium Begins! ?? Pathways to Progress: A Decade of Insights and Innovations in EDS & HSD ???? Join the world’s leading experts, researchers, and healthcare professionals in Toronto, Canada, from September 17-21, 2025—or attend virtually from anywhere in the world! ?? What to Expect: ?? Groundbreaking research on the Ehlers-Danlos syndromes (EDS) & hypermobility spectrum disorders (HSD) ?? Cutting-edge diagnostic and treatment advancements ?? Interactive workshops led by specialists ?? Networking opportunities, expert discussions & a gala dinner Be part of the future of EDS & HSD care!??Register today: https://lnkd.in/evquPZdt #EDS #HSD #ScientificSymposium #MedicalResearch #Genetics #ChronicIllness #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #Healthcare #HealthProfessionals #Researchers #Toronto #CanadianHealthcare

??Genetics and Inheritance of EDS and HSD? ? ??DNA is the genetic material that we inherit from our parents. Genes are sections of DNA that provide instructions for making proteins. Proteins carry out most of the processes that allow our bodies to function.? ? Differences in our genes are normal. Genetic variation is what makes each of us unique – it is what separates a blue eye from a brown eye or curly hair from straight. These differences are the result of genetic variants.? ? Genetic variants are different versions of the same gene. Genes carry the instructions for making proteins, so different genetic variants can result in different proteins. These proteins give us our traits or characteristics. One genetic variant of a gene may produce blue eyes, while another variant of the same gene may produce brown eyes.? ? ???Most genetic variants are harmless and do not negatively affect how the body functions. These are called benign variants. ?[Pictures 1 and 2] ? ?Some genetic variants are harmful because they contain errors in the instructions for making proteins. This can lead to faulty proteins that prevent the body from functioning properly, which can lead to illness. Harmful genetic variants are called pathogenic variants. [Picture 3] ? The Ehlers-Danlos syndromes (EDS) are a group of genetic connective tissue disorders. Each type of EDS is caused by pathogenic variants of genes that provide the instructions for making connective tissue proteins. hEDS is the most common type of EDS, but the genetic cause(s) of hEDS are unknown. The other types of EDS are associated with specific pathogenic variants. ? ? ??Genetic testing is available for every type of EDS except for hEDS.? ? Learn more about genetic testing, variants of unknown significance, and how the different types of EDS are inherited at https://lnkd.in/eYvDBJPS There you'll also find a comprehensive FAQ section. #MedicalGeneticsWeek

Dr. Tina J Wang is an American medical doctor and specialist consultant in Physical Medicine & Rehabilitation. She is a fascia researcher with a special focus on neurodiversity. Dr. Wang is trained in neurodiversity through the University of California at Los Angeles's Leadership Education in Neurodevelopmental Disabilities program, a National Institutes of Health initiative. Her published research focuses on the complex interplay of neuro-fascial inflammation in neurodiversity and in Ehlers-Danlos syndromes/hypermobility spectrum disorders. In this presentation, Dr. Wang talks about alternative healing techniques including yoga, meditation, and pilates. #NeurodiversityCelebrationWeek

Jane Green MBE FCCT was awarded an MBE for her incredible work supporting neurodivergent people and those with joint hypermobility conditions, including Ehlers-Danlos syndromes (EDS). A passionate educationalist turned advocate, Jane has become a national voice for raising awareness of the often-overlooked connection between Autism, ADHD, Dyspraxia, EDS, HSD, and JHS. At our 2023 Global Learning Conference, Jane delivered an unforgettable session titled: "Connecting the Dots between Autism, ADHD, Dyspraxia & EDS/HSD" She explored: Why these conditions have gone unlinked for so long Shared challenges AND unique strengths of neurodivergent individuals What it means to live with symptomatic hypermobility as a neurodivergent person Actionable tips for individuals, families, and professionals “When you connect the dots, you begin to understand the whole picture – and that's where real change begins.” – Jane Green #NeurodiversityCelebrationWeek

Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. Other problems such as fatigue, headaches, GI problems, and autonomic dysfunction are often seen as part of HSD. The hypermobility spectrum disorders occur when a person has symptomatic joint hypermobility that cannot be explained by other conditions. A person with HSD may have joint instability as their only concern or may have other medical issues as well. Learn more about symptoms, diagnosis, and management in this video with Dr. Clair Francomano. Find detailed information on #HSD linked in the comments below including information in Spanish. #Hypermobility #HypermobilitySpectrumDisorder #Healthcare #Medicine

You Asked, We Listened! ???? We know how often people ask, "Where can I find a doctor who understands EDS and HSD?" Our Healthcare Professionals Directory has helped thousands of people search for providers, and now you can help expand it! ??New Feature: Recommend a Provider! If you know a healthcare professional who understands EDS or HSD, you can now suggest that they be added to the directory. Simply click the "Recommend a Provider" button, and we’ll invite them to submit their information. ??Search the directory by country & state to find professionals who have listed their experience with EDS & HSD ??Help expand the network by recommending a provider to be added Check out the directory & recommend a provider today: https://lnkd.in/efq-c7uc Together, we can improve access to informed care and grow our support network! ?? #EDS #HSD #YouAskedWeListened #Healthcare #Hypermobility #ChronicIllness #ZebraStrong #HealthProfessionals #EhlersDanlos #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder

Would you like support around vascular Ehlers-Danlos syndrome (vEDS) and to connect with others impacted by vEDS?? ?? ? Our monthly Let's Chat: vEDS group meeting will be on Zoom today. ? Date: Wednesday, March 19 Time: 2:00 pm Eastern Time (US and Canada) / 6:00 pm BST (UK)? ? This meeting is for individuals living with vEDS and their families to speak with others in the vEDS community, listen, and share experiences with others who understand. ?You can join from anywhere in the world.? ? Register for this meeting here: https://lnkd.in/epq4xndn

Everesting for EDS! ????♀? In October 2025, Hannah Trueblood is taking on the 29029 Everesting challenge, climbing Stratton Mountain 17 times in 36 hours—the equivalent of summiting Mount Everest. All in support of The Ehlers-Danlos Society! "My mission during training is to raise $29,029 for EDS research for The Ehlers-Danlos Society, funding critical advancements for those affected by these complex conditions." Please join us in sending Hannah the biggest thank you and cheering her on for this incredible challenge! If you'd like to donate to Hannah's challenge you can do so here: https://lnkd.in/eR6hVMnR Thank you! #TogetherWeDazzle #MyEDSChallenge #EverestingForEDS #EhlersDanlosSyndrome

The President and CEO of The Ehlers-Danlos Society, Lara Bloom is in Sweden this week to attend a Fokus Patient meeting. Lara is speaking about the Ehlers-Danlos syndromes (EDS) and the importance of lived experience in the rare disease world. Lara had chance to meet with the two local Swedish EDS groups, part of The Ehlers-Danlos Society's Global Alliance, EDS/HSD-f?reningen [Photo 1], and The Swedish National Ehlers-Danlos Association [Photos 2 and 3]. As part of the event, Lara also participated in a workshop with The Swedish National Ehlers-Danlos Association on "HSD and hEDS – Underdiagnosed, Untreated, and Misunderstood". The discussion reinforced the urgent need for greater awareness, earlier diagnosis, and better access to care for those living with these conditions. https://lnkd.in/e58AZsUH https://lnkd.in/eUHktJfq #TogetherWeDazzle #EhlersDanlosSyndrome #EDS

Set Up a Fundraising Page & Support the EDS and HSD Community! ???? This month, when you set up a fundraising page and raise $50 for The Ehlers-Danlos Society, you’ll be entered into our monthly draw! ?? Every dollar raised helps fund vital care, access, research, and education to improve the lives of the EDS and HSD community. ?? This month’s prize? Our exclusive ‘Zebra Strong’ T-Shirt! ?? It’s simple to take part: ? Set up a fundraiser on JustGiving, Tiltify, Facebook, Instagram, or Funraise ? Ask your friends and family to support you ? Raise $50 or more and be entered into the draw! Start your fundraiser today & make an impact! Our Development Team is there to support you ever step of your fundraising journey. ?? https://lnkd.in/e4d4gGFq #TogetherWeDazzle #ZebraStrong #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder