Family Support

Family Support

Resources

Resources to share your challenges and triumphs, as well as find support.

Resources

Enroll

Enroll in the database registry to be eligible for research study.

Enroll

From sharing stories and information to working together to create awareness and fostering a spirit of care, families are the bond that unites our community. We are committed to working together, providing the tools and resources, expertise and care that foster our shared mission – to help every child who suffers from a rare disease.