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The CHAMP1 foundation is a patient-led organization that is driven with urgency to accelerate research and foster collaboration. We have worked tirelessly to make research tools freely available to the scientific community, biotech and pharmaceutical companies. Our goal is to provide what is needed at every stage for research and development.

We have invested a considerable amount of resources and effort to de-risk the process for others to get involved in our mission. We have streamlined the research process and are looking for difference makers  to join and get involved.  Our community is determined to push forth unmet needs of therapeutic for children affected with CHAMP1. Our foundation is solely invested to give our children the best quality of life with treatments. We are not interested in profit, intellectual property or gain. You’re working with a foundation and community completely dedicated to one purpose. 

For any inquiries on our registry, additional animal models, cell lines or on going projects, email info@champ1foundation.org. To order directly click on the links provided.

How to Access Rare-X Registry Data

Request access from Rare-X

How to Access Simons Searchlight Registry Data

Download the SFARI Base user guide.

Animal Models

Researchers or their institution’s purchasing representative interested in obtaining MMRRC mice, cell lines or cryo-preserved materials may request materials using the online Request Form (accessible from the Catalog Search page’s results listing).


Our Biorepository through Coriell Institute for Medical Research and instructions on how to order are available below.


Read more information at the link below. The antibody is also commercially available.

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