Ehlers-Danlos Syndrome (EDS) is a complex, multi-systemic group of disorders known for its challenges in diagnosis and management. Individuals suspecting they have EDS often wonder where they can obtain an accurate diagnosis and effective treatment. The pathway to an official EDS diagnosis and treatment sometimes involes specialized EDS clinics that offer a multidisciplinary approach to address the wide array of symptoms associated with the condition, but ideally patients would be able to access these same services through specialists in their local communities. Local care options is often quite minimal so these clinics provide comprehensive care that is crucial for many patients. Let's explore what an EDS clinic should look like and where to find the best clinics for Ehlers-Danlos Syndrome care.

1. What is an EDS Clinic?

An EDS clinic is a specialized medical facility dedicated to the diagnosis, treatment, and management of Ehlers-Danlos Syndrome and its associated conditions. These clinics are typically staffed by provider teams who deeply understand and cater to the complex needs of EDS patients. The approach should be patient-centered, focusing on validating experiences, providing exceptional care, and employing the latest internationally peer-reviewed criteria for diagnosis and management. It sounds perfect, right?! Unfortunately, finding this type of care isn’t always so easy to find.

2. What are the Best Clinics for Ehlers-Danlos Syndrome?

Several clinics and hospitals have developed programs specifically tailored for EDS patients, offering multidisciplinary care and support. Notable examples include:

• The EDS Clinic is dedicated to increasing access to care by providing evaluation, diagnosis, and treatment for EDS across multiple states.
• The Center for Complex Neurology, EDS, & POTS led by Dr. David Saperstein in Phoenix, Arizona, who is well known for his expertise in managing the neurological presentations of EDS.
• The EDS Clinic in South Bend, Indiana led by Dr. Jim Harris at the South Bend Clinic is known for their expertise in treating a broad spectrum of EDS manifestations, especially Hypermobile EDS.‍
• The Hypermobility & EDS Clinic at Tulane University is well known for Dr. Jacques Courseault's groundbreaking research and their commitment to supporting patients.
• ‍P.R.I.S.M Spine and Joint is a small but widely publicized clinic led by Dr. Alissa Zingman who has EDS and is trained in Orthopedic Surgery and Preventative Medicine.

• Mount Sinai South Nassau: Known for its comprehensive care approach, addressing a wide range of EDS symptoms and related conditions.
• The Pediatric Joint Hypermobility and Ehlers Danlos Syndrome Program at Children’s Mercy Kansas City: Specializes in pediatric care, offering tailored support for young patients.
• Mayo Clinic in Jacksonville: Offers a multidisciplinary approach to EDS, integrating various specialists to manage the condition effectively. It's important to note that The Mayo Clinic in both Arizona and Minnesota have not received the same positive reviews. There have been reports that Mayo in Phoenix is no longer accepting EDS patients, and there has been significant controversy surrounding Mayo Clinic in Rochester with regard to their approach to physical rehabilitation for POTS.
• Special Care Clinic at Children’s Hospital Colorado: Offers specialized care for children with EDS.
• Ehlers-Danlos Syndrome / Hypermobility Treatment Center at the New York Institute of Technology: Offers treatment and support to alleviate symptoms and improve well-being.

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What is the best clinic for Ehlers-Danlos Sydrome?

There no single clinic that is better than the rest. Each clinic has it’s own unique niche, and each serves a different geography.  Ultimately, the most important consideration is whether or not the EDS Clinic has the expertise and patient-centered approach that patients deserve. The new EDS Center of Excellence program from the Ehlers-Danlos Society is working to ensure that all of the top EDS Clinics meet this criteria.

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What is an EDS Center of Excellence?

The Ehlers Danlos Society's Centers of Excellence (COE) Program plays a pivotal role in enhancing the quality of care for EDS patients worldwide. The COE designation is awarded to institutions that demonstrate a patient-centered approach, exceptional care, and a commitment to the principles of the C.A.R.E model (Comprehensive, Accessible, Research-focused, and Expert care). Criteria for COE designation include:

• Patient-Centered Care: Listening, validating, and inclusivity in treatment approaches.
• Expertise in EDS: Demonstrated through clinical experience, research, and education.
• Multidisciplinary Approach: Involving a team of specialists from different fields to address the various aspects of EDS.
• Research and Education: Active engagement in EDS research and patient education.

Centers of Excellence Designation Criteria - Ehlers-Danlos Society

This program ensures that designated centers not only meet high standards of care but also contribute to the broader understanding and treatment of EDS through research and education.

In conclusion, navigating EDS care requires access to specialized clinics and knowledgeable healthcare professionals. By seeking care from clinics recognized for their expertise in EDS, patients can receive comprehensive, multidisciplinary support tailored to their unique needs. The Ehlers-Danlos Society's Centers of Excellence Program is instrumental in setting these care standards, ensuring patients worldwide have access to the best possible care.

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