These events and programs are listed here as an informational service. To learn more about individual events and programs, their organizers, and how to participate, click on the event link. To have your event listed here, or if you have feedback on this list you can email us at info@nysrdc.org
In December the Dysautonomia International association launched the first Dysautonomia International Autonomic Disorders Fellowship, a one-year advanced clinical training program designed to prepare physicians to become expert leaders in autonomic nervous system disorders. The fellowship curriculum was designed with the needs of our patient community in mind. Upon completion of the program, fellows will be prepared to lead new dysautonomia clinics, advance research, and contribute to improving care for millions of people living with dysautonomia.
The inaugural fellowship, with funding to support one fellow per year for the next three years, will be hosted at the University of Toledo Medical Center, under the supervision of internationally renowned dysautonomia specialist Dr. Blair Grubb, Distinguished University Professor of Medicine and Pediatrics and Director of the Syncope and Autonomic Disorders Clinic at the University of Toledo.
Autonomic disorders impact over 70 million people around the world. Yet despite the high prevalence, there remains a severe shortage of clinicians trained to diagnose and treat these conditions. Globally, there are fewer than 75 physicians board-certified in autonomic disorders, and only five medical schools offer autonomic fellowship programs. This fellowship program is a significant step in addressing that shortage of expert care.
The Dysautonomia International Autonomic Disorders Fellowship will provide comprehensive training in the diagnosis and treatment of postural orthostatic tachycardia syndrome, neurocardiogenic syncope, autonomic small fiber neuropathies, pure autonomic failure, and many other autonomic disorders. The fellows will also learn about many diseases associated with dysautonomia such as Sjogren’s, Parkinson’s, Ehlers-Danlos syndrome, long COVID, and mast cell activation syndrome, to name just a few.
“This fellowship fills a critical training gap,” notes Dr. Grubb. “We’re excited to partner with Dysautonomia International to mentor the next generation of physicians committed to advancing autonomic medicine.”
To learn more and possibly support this work click here
Join us as rare disease community members from across the state gather in Albany to:
host a rare disease awareness public display
ask Legislators to create a permanent New York State Rare Disease Advisory Council
support a New York State rare disease awareness resolution
meet with legislative offices about rare disease issues
More information and registration coming in January!
People with bleeding disorders like Von Willebrands Disease, Platelet Disorder, and Hemophilia from across New York State along with their family members assemble in Albany for a program of advocacy training and meetings with Legislators plus a public awareness display in the state capitol complex.