DAND Patient Contact Registry — DYNC1H1 Association

Join our Patient & Primary Caregiver Contact List

If you are the parent or main caregiver of a DYNC1H1 patient, we invite you to sign up on our Contact List provided below.

Your details will be utilized to communicate research prospects, share educational and advocacy materials, and facilitate connections among families. Rest assured, your information will never be disclosed for commercial intentions.

If you're unsure whether you're already registered or need to update your information, please feel free to email us at contact@dync1h1.org.

Other members of the community interested in staying apprised of events and updates should sign up for the Newsletter.

Name of Individual with DYNC1H1

Name of Person with Genetic Variant

First Name

Last Name

DYNC1H1 Variant

In your genetic report, it will begin with a "c." and a "p." Please Include both. If you aren't sure and want support, please write in "Not sure" or "Need help" and we'll reach out!

Year Born

Your Relationship to individual with DYNC1H1

Does anyone else in your biological family have this genetic variant?

If you check yes, we will reach out to you to collect information about others in your household.

Yes

Address

Address 1

Address 2

City

State/Province

Zip/Postal Code

Country

Would you like to be contacted by other families?

Yes

Would you like to be contacted about research opportunities?

These could be for general research, treatment possibilities, or future clinical trials.

Yes

Do you agree to be contacted by the DYNC1H1 Assocation?

I agree and acknowledge that I am authorized to provide the contact list information about myself, my family, and/or the person(s) with a DYNC1H1 genetic variant. I also understand and agree that the DYNC1H1 Association may contact me to provide information about information related to the DYNC1H1 Assocation and its partner organizations.

Want to do more? Make a donation.

Our research network is hard at work to make treatments ready for our community. They cannot do their work without funding. Donate today!

Cannot make a donation, but want to help? Reach out to us to find out how to volunteer! contact@dync1h1.org

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