Newly Diagnosed

You Are Not Alone.

KIF1A.ORG is a global community which exists to support and educate families affected by KIF1A Associated Neurological Disorder (KAND). Together we are strong, and together we drive research to discover treatments and cures. We foster disease education, advocacy, inclusion, support, hope, and unity! You are now part of a community which will never, ever give up. Just by being here you are doing everything right. Welcome to KIF1A.ORG.

Connect with us.

To connect with our community, please fill out the form below. A KIF1A.ORG staff member or volunteer will respond as soon as possible to connect you with more information and support.

"*" indicates required fields

Patient Information

Name*

First Last

Birth Year*

City

State

Country*

Genetic Report Information

(If necessary, review the next tab for information about reading your genetic report.)

Name of Gene Mutation (ex: KIF1A)

This information is typically provided on your genetic test report. Example: KIF1A

Coding DNA of KIF1A Mutation (c.)

This information is typically provided on your genetic test report. Example: c.914 C>T

Amino Acid/Protein Change of KIF1A Variant (p.)

This information is typically provided on your genetic test report. Example: p.Pro305Leu or P 305 L

File

Max. file size: 10 MB.

If you would like to share your genetic report with KIF1A.ORG, you can attach it here.

Contact Person #1

Name*

First Last

Your Relationship to the patient*

Email*

Phone number

Contact Person #2

Optional

Name

First Last

Relationship to the patient

Phone number

Questions and Additional Information

Do you have any questions?

Yes

Please list your questions.

Any Additional Information You Would Like to Share?

Consent to Information Sharing

REQUIRED: Information Sharing with KIF1A.ORG and Trusted Partners*

By checking this box you agree: (1) that you have permission to share any data submitted about KIF1A family members through this form, and (2) you voluntarily share the information submitted on this form with KIF1A.ORG and/or our trusted partners, such as the Chung Laboratory at the Boston Children’s Hospital, for the purpose of advancing KIF1A research and efforts to discover treatment.

I agree.

OPTIONAL: I would like to receive future emails from KIF1A.ORG

Yes

OPTIONAL: KIF1A.ORG Family Directory and Variant List

By checking this box you agree: To voluntarily share the information submitted on this form with the KIF1A.ORG Family Community for the purpose of helping families connect with one another for support.

I agree.

What information is being shared? Information in the KIF1A family directory will include the names of KIF1A patients and/or parents, city/state/country and KIF1A variant.

How will this information be used? 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 to other families upon request by emailing impact@kif1a.org. As a community group, we seek to connect families with the same KIF1A mutation, or living in similar areas, to provide mutual support.

How will this information be made available? 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.

How can I remove this information? If you want us to remove your information from our sharing efforts (e.g. the KIF1A family directory), send your request via email to impact@kif1a.org. Please note that any data already shared cannot be destroyed or recalled, but we will remove your information from the current record.

Comments

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