Project FIND-OUT

What is Project FIND-OUT?

Project FIND-OUT is an innovative project provides crucial support to families, helping them understand if there is an underlying genetic cause of their child’s symptoms through early whole genome sequencing. This is not just about finding answers; it’s about contributing to a larger understanding of these disorders, benefiting the broader community of patients, families, and healthcare providers.



Families participating in Project FIND-OUT will receive a comprehensive package of support, including a free neurological assessment and whole genome sequencing for their babies, as well as genetic counseling for the family. This holistic approach ensures that families are not only informed about their child’s condition but are also guided on the next steps to take, armed with recommendations tailored to their unique situation. All these services are offered free of charge and are accessible remotely, ensuring that help is just a phone call or click away, regardless of a family’s location.

Who Can Benefit?

Project FIND-OUT is only open to infants in the United States between the ages of 3-12 months who have 2 or more of the below symptoms.

A black and white icon of a bottle with a heart on it.

Feeding or gastrointestinal issues

A black and white silhouette of a baby in a diaper.

Issues with movement/abnormal movements

A person is laying in a hospital bed with an iv in their arm.

Neonatal intensive care (NICU) admission

A baby is crawling on its stomach on a white background.

Developmental delay

A female doctor with a stethoscope around her neck.

Other (congenital malformations, atypical growth or specialist referral)

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Unprovoked seizures

A silhouette of a baby in a diaper free icon

Tone (low muscle tone)

What Are The Benefits Of Project FIND-OUT?

  • Families who participate will receive the following free services:
  • Meet with a genetic counselor
  • Report with your child’s genetic testing results
  • Connect with a specialist, who can help you understand next steps and potential treatment options
  • Participate in research


By participating in Project FIND-OUT, you will contribute to an important research study on the value of genetic testing. We hope this study will lead to the development of guidelines for physicians and health insurance companies. Having guidelines may make it easier for other families to get genetic testing in the future and a genetic diagnosis in the future. Lastly, getting children diagnosed earlier will speed up access to new treatment options.