By checking this box, you agree to voluntarily share the information submitted on this form with KIF1A.ORG
, the KIF1A.ORG
family community, and/or our trusted partners, such as Chung Laboratory at Columbia University Medical Center, for the purpose of 1) helping families connect with one another through a KIF1A family directory and 2) helping our trusted partners advance KIF1A research and efforts to discover treatment. You agree that you have permission to share any data submitted about KIF1A family members through this form.
Information in the KIF1A family directory will include the names of KIF1A patients and/or parents, city/state/country and KIF1A variant. This information will allow KIF1A family members to identify one another in our support group. Email addresses and phone numbers of family members in the directory will be made available upon request by emailing email@example.com
This directory will be available in a password-protected format and/or forum that requires a registration/login to help keep this information limited to the KIF1A family community. However, we cannot guarantee that information will not be shared with people outside of the KIF1A community by people who have access to the directory.
If you want us to remove your information from our sharing efforts (e.g. the KIF1A family directory), send your request via email to firstname.lastname@example.org
. Please note that any data already shared cannot be destroyed or recalled, but we will remove your information from the current record.