Join the Registry
Application Forms for Registry Membership
There are two ways you can request an application packet to join the Registry:
- Contact our office at 1-888-925-4302 or 585-276-0004
- Download the application materials from the links below
If you are a clinic, physician’s office or patient support group, 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!
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 contact the Registry office.
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 at the link on the bottom of this page.
Once you have downloaded the application materials, please print and complete the forms and return them to us by mail using the postage paid label provided.
Please be sure to download and complete ALL requested forms so we are able to process your application as quickly as possible. If you need assistance with this packet, please call us at the National Registry Office (888-925-4302). Thank you!
- Adult with Myotonic Dystrophy
- Child with Myotonic Dystrophy
- Unaffected Family Member of Person with Myotonic Dystrophy (Adult)
- Unaffected Family Member of a Person with Myotonic Dystrophy (Child)
- Adult with FSHD
- Child with FSHD
- Unaffected Family Member of Person with FSHD (Adult)
- Unaffected Family Member of a Person with FSHD (Child)
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Last Reviewed and Updated 12/14/2011
