If you are a parent or clinician for a 3-12 month old with feeding issues, problems with movement or muscle tone, or who has missed developmental milestones, you may benefit from genetic testing. Learn more about Project FIND-OUT, which provides free genetic counseling and testing for eligible infants between the ages of 3-12 months.
Parents / Families: Learn About Enrollment | Healthcare Providers: Patient Testing Referrals
The Undiagnosed Diseases Network (UDN) is a research study funded by the National Institutes of Health. Its purpose is to bring together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies.
Through this study, we hope to both help individual patients and families living with the burden of undiagnosed diseases, and contribute to the understanding of how the human body works.
Hours: 9am – 5pm ET (Mon-Fri) | Email: UDN@hms.harvard.edu | Phone: 1-844-746-4836 | (1-844-Ring-UDN)
Genome Medical Collaboration: Telehealth genetic experts can provide guidance, order tests, and provide genetic counseling follow up for those without timely access to a genetics provider.
Epilepsy Partnership Program: This initiative ensures eligible patients can access genetic testing, even if insurance denies coverage or patients lack insurance.
Support Services | Billing Support | Phone: 888-729-1206, option 3, and ask to speak with a genetic counselor.
GeneDx Advocacy page: A list of umbrella organizations, disease-specific organizations, and instructions for finding gene-specific organizations.
If your organization offers testing for RNU4-2 / ReNU Syndrome, please contact us at renusyndromeunited@gmail.com to be added to this site as a resource.