National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members

Contact Us

Phone - fax :

• Toll free: (888) 925-4302 9 a.m. to 4 p.m. weekdays, EST
• Local (Rochester, NY): (585) 276-0004
• Fax: (585) 273-1255

Address :

National Registry of Myotonic Dystrophy and FSHD
601 Elmwood Avenue, Box 673
Rochester, NY 14642-8673

Email :

dystrophy_registry@urmc.rochester.edu

***Due to rules concerning the privacy of confidential medical information, we are unable to reply to your email messages, without your prior written consent. Please complete the Patient Email Consent form and mail or fax it back to the Registry and we will respond to your emailed request. You may also call the Toll free number listed above or email your phone number to us and we will call you to discuss your concerns.***

Updated 9/12/2004