About the DSRCT Initiative

Stronger Together.

When DSRCT enters a family’s life, it arrives with fear, uncertainty, and isolation. The DSRCT Initiative is a global community connecting families through shared knowledge, support, and advocacy, so no one walks this road by themselves.

DSRCT Reference & Resource Library

This library brings together research, articles, clinical trials, and community resources for this rare disease in one place, curated from decades of lived experience within our community. It is a working collection, not a complete list, but we hope it can be a useful tool in educating and empowering yourself in the fight against DSRCT.

Explore the library →
Rare doesn't mean only you. The DSRCT Initiative. Rare, not invisible. The DSRCT Initiative. We are stronger together. The DSRCT Initiative. What the research can tell us is still limited, but what we can learn from each other is not. The DSRCT Initiative.

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Peer Support

Join our peer support community

The DSRCT Initiative runs virtual groups for patients, caregivers, and the bereaved, with members across dozens of countries and U.S. states. Wherever you are, there is a seat for you.

Join the community

Or reach us at

Hope Always in the fight against DSRCT,

Laura Owens (Cole’s Mom)

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