Familial Dysautonomia: the leader in FD treatment and research
Dysautonomia Center at
NYU Langone
Dysautonomia Center at NYU Langone
In the 1970s the Foundation was instrumental in establishing the Dysautonomia Center at NYU Langone, now the world’s premier site offering medical treatment for and clinical research on FD. Founded by Dr. Felicia Axelrod, the Center is now headed by Horacio Kaufmann, MD, the world-renowned authority on familial dysautonomia. Staffed by an interdisciplinary team of physicians, nurses, and other professionals, the Center offers stellar medical care, both on-site and virtually through telemedicine; conducts clinical research; consults with patients’ personal physicians and manages the FD Natural History Study.
Treatment for Familial Dysautonomia
The Dysautonomia Center offers
- Scheduled visits as well as 24/7 emergency consults with physicians for FD patients worldwide.
- Virtual visit kits that allow for real-time collection of vital health data during telemedicine appointments.
- Personalized medical care programs based on periodic evaluation visits.
- Referrals to a mental health professional, thanks to a grant from the Montreal Chapter of Dysautonomia. To learn more, please contact the Dysautonomia Center.
- Comprehensive care treating speech difficulties, gastrointestinal issues, feeding and digestion issues, ophthalmologic complications, and orthopedic problems.
- Opportunities to participate in clinical research studies.
- The world’s only comprehensive FD patient registry. This is an electronic relational database of medical information dating back to 1970.
The Center has successfully transformed FD from a once fatal childhood disease into a chronic condition. Thanks to advances in care, people with FD who once had a 50% chance of reaching age 5, now have a 75% chance of living to 40 years old.
Stay up to date with the latest from the Dysautonomia Center at NYU by going to: https://dysautonomiacenter.com
Meet the Team
Dr. Horacio Kaufmann, MD, FAAN
Director, Dysautonomia Center
Dr. Alejandra González-Duarte, MD, PhD
Co-Director, Dysautonomia Center
Dr. Patricio Millar MD
Research Instructor
Dr. Kaia Dalamo, DNP, FNP-BC
Specialist Nurse Practitioner
Jose Martinez, MA
Senior Clinical Trials Manager
Mechteld Kuijpers
Project Assistant
Lee-Ann Lugg
Program Coordinator
Mike Yates
Project Assistant
Location
Dysautonomia Center
530 First Avenue, Suite 9Q, New York, NY, 10016
Phone
Lee-Ann Lugg
Program Coordinator
lee-ann.lugg@nyulangone.org
©2023 Familial Dysautonomia Foundation, Inc.
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Photos by Rick Guidotti, POSITIVE EXPOSURE EIN 13-6145280
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The information provided in the Dysautonomia Foundation web site is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, or your child, or someone you know, suffer from the conditions described herein, please see your health care provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.
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Medical Disclosure
The FD Foundation does not offer medical advice. We always recommend that you contact the Dysautonomia Center (link here) or your personal physician.