Contact Us
Phone/Fax
- Toll free: (888) 925-4302
- Local (Rochester, NY): (585) 276-0004
- Fax: (585) 273-1255
Address
National Registry of Myotonic Dystrophy and FSHD
University of Rochester Medical Center
601 Elmwood Avenue, Box 673
Rochester, NY 14642-8673
*Due to rules concerning the privacy of confidential medical information, we are unable to reply to your email messages without your prior written consent. If you'd like to communicate by email, please complete the Email Consent and send it to the Registry. Please note that you only need to complete "Subject Name," "Subject Email" and sign and date at the bottom.
Please include your phone number in your email so we can call you if needed.
Contact Us
Registry Coordinators:
Jim Hilbert and Liz Luebbe
Toll free: (888) 925-4302
Email us
Help us make a difference!
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