Join our Patient Contact Registry - it only takes a minute!

If you are the parent or main caregiver of a DYNC1H1 patient, one of the easiest, simplest steps you can take to speed up research is by registering with us. No matter your country or language, we represent all patients with DYNC1H1-related disorders.

Your information 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.

Infographic promoting the DA's patient contact registry. It lists three reasons to join: 1. Your variant can become a focus, 2. Get connected with other patients, 3. Clinical trials with you in mind. The call to action encourages registering at dync1h1.org/registry, mentioning that 141 people have raised their voices and the goal is 200.
A young boy with light brown hair and fair skin at a playground.
A young boy sitting on a grassy field in a park, wearing a dinosaur print T-shirt and beige shorts, with playground equipment and trees in the background.
Young woman with long brown hair sitting indoors, with intricate blue and white face paint resembling snowflakes and icicles, wearing a light grey hoodie with a black design on the front and red pants.
Two children, a boy and a girl, playing and smiling in the ocean waves at the beach.
A collage of six photos: a woman and two children happily playing, a room with a stroller and toys, two kids sitting at a table with drinks, a child in a shopping cart wearing a winter hat, kids playing with tablets on a rug, and a child in a swimming pool with an adult.
Graphic with three reasons to join the patient contact registry. Step 1: Your variant can become a focus. Step 2: Connect with other patients. Step 3: Clinical trials thinking of you. Text also includes: '141 people have raised their voice to the registry. Help us reach 200 for the New Year. Register today.' Website link: dync1h1.org/registry.

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

Informational poster in Portuguese with three reasons to join patient registry: 1. Your variant can become a focus; 2. Connect with other patients; 3. Clinical trials with you in mind. Includes website link.
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Infographic in Dutch titled "3 REDENEN WAAROM U LID MOET WORDEN VAN DE PATIËNTENCONTRACTREGISTER." Three steps with icons: 1) magnifying glass over DNA icon, 2) connected patient icons, 3) three people with clinical forms and magnifying glass. Text explains reasons for registration, with a URL at the bottom.