USA: DSRCT Initiative

Mission of the DSRCT Initiative:

To unite everyone impacted by Desmoplastic Small Round Cell Tumor (DSRCT) through community, awareness, accessible disease resources, and direct family support, pursuing a world where no one faces this disease alone or without hope.

What we've accomplished so far in 2026:

The dsrct-initiative.org website which currently holds:
📖  DSRCT Reference & Resource Library
🏔️ DSRCT Lived Experience Guides
🎗️ The DSRCT Awareness Shop

🫂 A weekly virtual peer support group, where families from around the world show up for each other.
The group's purpose is to create a space for community, connection, and information sharing for DSRCT patients, caregivers, and partners, valuing diverse perspectives from all stages of the disease journey.

Currently the group has 92 registered members and has seen 63 unique participants. 32 individuals have attended 2 or more sessions, and 9 individuals have attended 10 or more. Our group represents DSRCT families from 24 US states and 17 other countries. 35% of those registered for our group were diagnosed internationally.

📽️ The Hope Always in the fight against DSRCT YouTube channel, featuring patients, caregivers, clinicians, and researchers sharing their DSRCT experience and expertise.

📱Awareness and community focused content @dsrctinitiative on Instagram