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UR Medicine


Join the Registry

  • Call us toll-free at (888) 925-4302 to request an application, or
  • Download an application from one of the links below.


  1. You will need a copy of Adobe Acrobat to view the forms. If you do not have Acrobat on your computer, you can download it free from Adobe.
  2. Please select the appropriate link below. There are different forms for Myotonic Dystrophy and FSHD.
  3. Once you have downloaded the forms, please print and complete them and return by mail using the postage paid label provided.
  4. Please download and complete ALL of the forms so we are able to process your application as quickly as possible. If you need assistance, please call us at (888) 925-4302.

Help us Recruit

If you are a clinic, physician’s office, or patient support group, please contact us to request multiple packets. Please indicate the quantity of each type of packet needed. We will be happy to ship them to you!