We are a coalition of advocates, researchers, doctors, families, and individuals.
Many of us live with connective tissue disorders. All of us share a mission:
Advancing Research and Support for people affected by connective tissue disorders
The Connective Tissue Coalition is 501(c)(3) nonprofit committed to improving the lives of people affected by Ehlers-Danlos Syndromes, Marfan Syndrome, Loeys-Dietz Syndrome, and related conditions.
Pain Management
Medications, Supplements, Laser, Accupuncture, Pain relief devices
Physical Therapy
Paced exercise focused on building stability, not flexibility; gradual increase to avoid flare-ups
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Lifestyle Changes
Ergonomic setup for work, sleep, travel; disability accomodations, mobility aids, pacing
Surgery
Surgical intervention with specialists familiar with EDS/CTDS
What treatment is available for EDS?
Finding the right treatment plan for you can have a profound impact on your quality of life. More information for EDS treatment coming soon!
Pain Management
Medications, Supplements, Laser, Accupuncture, Pain relief devices
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Physical Therapy
Paced exercise focused on building stability, not flexibility; gradual increase to avoid flare-ups
​
Lifestyle Changes
Ergonomic setup for work, sleep, travel; disability accomodations, mobility aids, pacing
​
Surgery
Surgical intervention with specialists familiar with EDS/CTDS
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The CTC Medical Advisory Board (MAB) includes researchers, doctors, and other health professionals from across the United States, the UK, and Canada.
Connective tissue disorders are complex conditions that require a wide range of treatment. Our Medical Advisory Board brings together professionals across fields to foster collaboration, deepen scientific understanding, and promote cutting-edge research to improve the lives of people living with connective tissue disorders.
​​​​​More about the Medical Advisory Board coming soon!
Ehlers-Danlos Syndromes (EDS) are a group of inherited connective tissue disorders caused by defects in the way collagen is used or produced in the body. Because collagen provides structural support throughout the body, EDS can affect multiple body systems simultaneously.
Ehlers-Danlos Syndromes are a group of 13 genetic connective tissue disorders that affect the way collagen is produced or used in the body. Collagen is a protein that provides structure and support to connective tissues, including skin, muscles, ligaments, tendons, and bones. People with EDS experience weakened connective tissues as a result of collagen abnormalities. Connective tissues are everywhere in the body. This means EDS is complex and typically affects multiple body systems at once.
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Custom ring splints created by OT Donna VanHelene offer support for hypermobile fingers
How is EDS Diagnosed?
Doctors who specialize in connective tissue disorders diagnose EDS based on a combination of physical exam, co-occurring conditions, family history, and genetic testing. During a physical exam, the doctor will look for signs and symptoms of EDS, including joint hypermobility, stretchy skin, and easy bruising. They will ask questions about your family medical history to determine if your relatives have signs of a connective tissue disorder or related conditions. They will recommend genetic testing if they suspect you have one of the 12 subtypes of EDS with a recognized genetic marker. If the doctor suspects you have hypermobile Ehlers-Danlos Syndrome, they may not recommend genetic testing, since there is currently no genetic test available.
Marfan syndrome is a genetic disorder affecting the connective tissues that provide support and elasticity to structures throughout your body. Marfan Syndrome is caused by a change (mutation) in the gene FBN1. This gene gives instructions for making the protein fibrillin-1, which helps build strong, stretchy fibers in connective tissue that hold our bodies together. When FBN1 is mutated, the body makes a faulty version of fibrillin-1 that cannot do its job. As a result, tissues in the body become weak and overly stretchy, and bones can overgrow.
Ehlers-Danlos Syndromes are a group of 13 genetic connective tissue disorders that affect the way collagen is produced or used in the body. Collagen is a protein that provides structure and support to connective tissues, including skin, muscles, ligaments, tendons, and bones. People with EDS experience weakened connective tissues as a result of collagen abnormalities. Connective tissues are everywhere in the body. This means EDS is complex and typically affects multiple body systems at once.
There are currently 13 recognized subtypes of EDS. They are classified based on clinical features, genes affected, and pattern of inheritance.
Loeys-Dietz syndrome is a genetic condition that affects connective tissue and causes changes in the heart, blood vessels, bones, joints, skin, and internal organs. Dr. Bart Loeys and Dr. Hal Dietz first identified the syndrome at the Johns Hopkins University School of Medicine in 2005.
Hypermobile EDS (hEDS) is the most common subtype, with symptoms often including joint hypermobility, chronic pain, and fragile, velvety skin that bruises easily. People with hEDS can be prone to subluxations and dislocations that occur spontaneously or on minimal impact. They can also have related conditions, including dysautonomia/POTS, Mast Cell Activation Syndrome (MCAS), gastrointestinal dysmotility, and chronic fatigue. The Norris Lab's recent global study found that hEDS patients surveyed had an average of 24 co-occurring conditions.
Hypermobile EDS is considered a genetic condition. However, scientists are still in the process of identifying genes that impact the condition; at this time, there is no reliable genetic testing available for hEDS. Instead, the diagnostic process relies on clinical verification.
Vascular EDS (VEDS) is a rare, serious connective tissue disorder. “Vascular” refers to the body’s system of blood vessels. People with VEDS have fragile arteries (blood vessels) and internal organs, putting them at high risk of severe bleeding, organ rupture, and other life-threatening complications. ​​​
​VEDS is caused by mutations (changes) in the gene that tells the body how to make collagen III, a protein that provides strength to blood vessels, the bowel, uterus, and other hollow organs. In people with VEDS, these genetic changes have serious consequences: their bodies do not produce enough collagen III, or the collagen III they make is faulty and does not function properly. When collagen III cannot do its job, blood vessels and other organs can become severely fragile.​
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Learn more about Vascular EDS and available resourcesat the VEDS Movement.
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CTC provides research grants to qualified researchers working to better understand our complex conditions, and develop accurate diagnostic protocols and effective new treatments.
The CTC's Research Grant Program advances the field of connective tissue disease research and related disorders. We provide funding to promising researchers who are dedicated to finding breakthroughs for Ehlers-Danlos Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, or commonly related disorders (ex: Tethered Cord Syndrome, Mast Cell Activation Syndrome).
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This program aims to:
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Foster new and expanded research in the field of connective tissue diseases
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Encourage early-career researchers to pursue research on connective tissue disorders and related conditions.
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Provide seed funding with the potential to secure larger grants in the future
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More information about our grant requirements and how to apply coming soon!
CTC Funded Research & Awareness Iniatives Highlight
Film: COMPLICATED
CTC is proud to support the film COMPLICATED. Directed by Andrew Abrahams and co-produced by Donna Sullivan, COMPLICATED follows young adults with Ehlers-Danlos Syndrome and their families as they fight for treatment in a medical system that too often fails them
We are a coalition of advocates, researchers, doctors, families, and individuals.
Many of us live with connective tissue disorders. All of us share a mission:
Advancing Research and Support for people affected by connective tissue disorders
The Connective Tissue Coalition is 501(c)(3) nonprofit committed to improving the lives of people affected by Ehlers-Danlos Syndromes, Marfan Syndrome, Loeys-Dietz Syndrome, and related conditions.
Explore the
Coalition
We are a coalition of advocates, researchers, doctors, families, and individuals.
Many of us live with connective tissue disorders. All of us share a mission:
Advancing Research and Support for people affected by connective tissue disorders
The Connective Tissue Coalition is 501(c)(3) nonprofit committed to improving the lives of people affected by Ehlers-Danlos Syndromes, Marfan Syndrome, Loeys-Dietz Syndrome, and related conditions.
We are a coalition of advocates, researchers, doctors, families, and individuals.
Many of us live with connective tissue disorders. All of us share a mission:
Advancing Research and Support for people affected by connective tissue disorders
The Connective Tissue Coalition is 501(c)(3) nonprofit committed to improving the lives of people affected by Ehlers-Danlos Syndromes, Marfan Syndrome, Loeys-Dietz Syndrome, and related conditions.
Explore the Coalition
"What the Connective Tissue Coalition has achieved in just five years is nothing short of inspiring. By raising funds and directly deploying meaningful grants, Jon Rodis and his team have shown what true community-driven advocacy looks like. They aren't just raising awareness—they are actively fueling solutions and changing the trajectory for individuals living with connective tissue conditions."
Christy Jagdfeld, CEO, Brain Inflammation Collaborative
Welcome to the Connective Tissue Coalition
CTC is a 501(c)(3) non-profit committed to advancing research and support for people affected by connective tissue disorders. Our focus encompasses Ehlers-Danlos Syndromes, Marfan Syndrome, Loeys-Dietz Syndrome, and related conditions. We are a network of advocates, researchers, doctors, families, and individuals, many of us living with connective tissue disorders. Together, we work tirelessly to raise awareness, fund essential research, and foster community.​
Film: COMPLICATED
CTC is proud to support the film COMPLICATED. Directed by Andrew Abrahams and co-produced by Donna Sullivan, COMPLICATED follows young adults with Ehlers-Danlos Syndrome and their families as they fight for treatment in a medical system that too often fails them
Visit the Marfan Foundation for more resources
Welcome to the Connective Tissue Coalition
CTC is a 501(c)(3) non-profit committed to advancing research and support for people affected by connective tissue disorders. Our focus encompasses Ehlers-Danlos Syndromes, Marfan Syndrome, Loeys-Dietz Syndrome, and related conditions. We are a network of advocates, researchers, doctors, families, and individuals, many of us living with connective tissue disorders. Together, we work tirelessly to raise awareness, fund essential research, and foster community.​
Welcome to the Connective Tissue Coalition
CTC is a 501(c)(3) non-profit committed to advancing research and support for people affected by connective tissue disorders. Our focus encompasses Ehlers-Danlos Syndromes, Marfan Syndrome, Loeys-Dietz Syndrome, and related conditions. We are a network of advocates, researchers, doctors, families, and individuals, many of us living with connective tissue disorders. Together, we work tirelessly to raise awareness, fund essential research, and foster community.​​
Welcome to the Connective Tissue Coalition
CTC is a 501(c)(3) non-profit committed to advancing research and support for people affected by connective tissue disorders. Our focus encompasses Ehlers-Danlos Syndromes, Marfan Syndrome, Loeys-Dietz Syndrome, and related conditions. We are a network of advocates, researchers, doctors, families, and individuals, many of us living with connective tissue disorders. Together, we work tirelessly to raise awareness, fund essential research, and foster community.​
EDS Subtype Overview
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Arthrochalasia EDS (aEDS)
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Brittle cornea syndrome (BCS)
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Cardiac valvular EDS (cvEDS)
Learn more about the 12 rare forms of EDS at the Collagen Advocacy Network (CAN).
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The information on this website is for general educational purposes only and is not medical advice, diagnosis, or treatment. It is also not intended to serve as legal advice or replace professional legal counsel. We do our best to keep information accurate and up to date, but science and medicine change quickly and the content here may not reflect the latest guidance or apply to every individual. Please do not rely on this site to make medical or legal decisions. References or links to external resources, organizations, products, or services are provided for informational purposes only and do not constitute endorsement or recommendation.