RARE-X

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Participating in a data collection program is one of the most important things that families with a child with CHD2-related neurodevelopmental disorders can do.

Having a robust database will allow CCC to generate more interest from clinicians, researchers and drug developers that we need, in order to help discover a treatment specific for CHD2-related disorders.

To Register your loved one, please go to: https://chd2.rare-x.org/

RARE-X Why Infographic

RARE-X What Infographic

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CHD2 Data Results through 12/30/22

155 CHD2 patients enrolled worldwide

RARE-X Results through 9/9/2022

Are you one of the 79 people who haven't consented yet on the upgraded RARE-X platform? Email support@rare-x.org if you have questions.

Ongoing Studies

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RARE-X Study

Participating in a data collection program is one of the most important things that families with a child with CHD2-related neurodevelopmental disorders can do.

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CHD2 In Adults

This study aims to understand seizures, communication and daily living of adults with CHD2 mutations.

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Ciitizen/Invitae

Natural History Studies (NHS) are critical to the drug development process. Ciitizen has developed a new method to make this process easier.

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