08/16/2026
Posted by Sibylle Dahrendorf on X for
Quote from Dr. Paolo Bolognese at The Center for Neuro-EDS and Craniospinal Disorders FB Group: It is allowed to share widely:
"Please share this amazing news!
Have you ever felt unseen or not believed by a physician?
Overwhelmed by the challenge of coordinating care among multiple specialists?
The Center for Neuro-EDS and Craniospinal Disorders is working to change this model of disconnected care.
Led by Dr. Paolo Bolognese, Dr. Allison R. Bloom, Dr. Illene S. Ruhoy, Dr. Randall A. Dass, Dr. Amanda Lerner, and Dr. Petra M. Klinge, a groundbreaking research paper, “Defining Neuro-EDS: A Neuro-Predominant Phenotype in hEDS/HSD and Related Heritable Connective Tissue Disorders,” is currently under peer review.
This paper is the culmination of discussions involving nearly three dozen international experts from multiple fields who care for and study complex Neuro-EDS patients.
By formally defining a Neuro-EDS endotype—a subcategory characterized by distinct biological and functional pathways—the goal is to advance several important objectives:
1. Unifying the language of the disorder
Creating a clear description and framework can improve communication among patients, physicians, and researchers.
2. Validating an endotype
Recognizing that conditions such as CCI, occult tethered cord, intracranial hypertension, spontaneous intracranial hypotension, cerebral and abdominal venous compressions, MCAD, dysautonomia, and related disorders can co-occur and contribute to multisystem symptoms may help researchers identify the underlying biological mechanisms and neuroinflammatory pathways connecting them.
3. Increasing recognition and access to care
Establishing a recognized disorder can eventually support the development of ICD-10 coding, potentially helping patients navigate insurance approvals while creating pathways for increased research funding.
4. Bringing current research and expertise to patients and physicians
Look forward to a YouTube channel featuring discussions with experts and patients, helping make emerging research more accessible to the broader community.
This is only the beginning.
Following peer review and publication of the paper, additional research will be needed to better understand the underlying biological mechanisms and, ultimately, develop improved diagnostic tools and treatments.
The Mount Sinai Health System is committed to developing a “medical home” model in which the burden of coordinating complex care can shift from the patient back to a team of knowledgeable experts.
For patients who have spent years searching for answers, being dismissed, or struggling to coordinate care across numerous specialties, this represents an important step toward recognition, understanding, and hope.
*Please share this announcement widely.
Share it with patients who need hope.
Share it with physicians who want to learn.
Share it with researchers who can help advance the science.
Awareness creates opportunity. Research creates understanding. And understanding can lead to better care.
Read the paper and learn more about this important step forward:
https://preprints.org/manuscript/202608.0567/v1
For detailed research and more information, see
https://neuro-eds.com
'EDS
The Center for
