Join the Registry

Application Forms for Registry Membership

There are three ways you can request an application packet to join the Registry:

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!

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Last Reviewed and Updated 11/10/2008