Join the Registry

Application Forms for Registry Membership

You can receive an application packet by contacting the Registry office or you can download the necessary forms from this site. You will need a copy of Acrobat to download the forms. If you do not have Acrobat on your system, you can download it free at the link on the bottom of this page.

Please be sure to select the appropriate link as the packets are designed to meet your particular needs. There are different forms for adults who are affected vs. unaffected and for children (applicants under 18 years of age). If you have questions regarding the appropriate packet to select, please call the Registry office.

Once you have downloaded the information, print and complete the forms and return them to us by mail.

If you are a clinic or physician’s office, please contact our offices to request additional packets. Please indicate the quantity of each type of packet needed. We will be happy to ship the forms to you!

• Myotonic Dystrophy Affected Adult
• Myotonic Dystrophy Affected Child
• Unaffected Family Member of Person with Myotonic Dystrophy (Adult)
• Unaffected Family Member of a Person with Myotonic Dystrophy (Child)

• FSHD Affected Adult
• FSHD Affected Child
• Unaffected Family Member of Person with FSHD (Adult)
• Unaffected Family Member of a Person with FSHD (Child)

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Updated 9/12/2006