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

212-263-7225

 

Lee-Ann Lugg

Program Coordinator

lee-ann.lugg@nyulangone.org

Connect with Us

©2024 Familial Dysautonomia Foundation, Inc.
| Disclaimer | Privacy Policy | Medical Disclosure

Photos by Rick Guidotti, POSITIVE EXPOSURE EIN 13-6145280

315 W 39th St, Suite 701, New York, NY 10018

212.279.1066

Email Us

 

Let's Connect

        

NORD Platinum member 2023. Candid Platinum Transparency 2023. Charity Navigator. 4 Star Charity.

Website Disclaimer
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.

The Foundation provides linked sites only for the convenience of the visitor. The Foundation does not control nor does it warrant the accuracy of any information provided by these linked sites. Individually identifiable user information is not collected through this site unless voluntarily submitted to the Foundation by the user. Linked sites may have different privacy policies. Any User information submitted directly to the Foundation will not be shared with other parties without the express written consent of the User.

Privacy Policy
The Familial Dysautonomia Foundation will not share or sell any personal information (name, address, email address, phone numbers) that you submit through this website or offline with any third party organization without your explicit consent.

If you conduct a transaction on our website for the purpose of a charitable contribution, we will not record or store any of your credit card information on our servers or in our records. All credit card transactions are conducted through secure web pages.

If you make an online contribution to one of our events or fundraisers, we may ask your permission to list your name and/or the amount of your contribution and/or the name of the organization you represent (if applicable) as a sponsor of the event or as a contributor to the event. We will not list any of your personal information without your consent.

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.