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

Email

email*

*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

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