Intended for U.S. use only
Your guide to help find answers about your child’s health.
RESOURCES

Check out these resources to help support you on your journey.

For customized resources, click here.

U.S. National Resources

National Rare Disease and Undiagnosed Resources

Global Genes

Global Genes empowers families affected by rare diseases to tackle the confusing experience and emotions. Patients and advocates can go to Global Genes for resources, information on events and advocacy information for rare disease initiatives.

National Organization for Rare Disorders (NORD)

NORD is a patient advocacy organization committed to supporting individuals with rare diseases and the organizations that serve them. NORD offers parents free webinars, fact sheets and other educational materials on rare disease, as well as Patient Assistance Programs and a rare disease database.

NIH Genetic and Rare Diseases (GARD) Information Center

GARD has compiled a list of Tips for Undiagnosed Patients that contains helpful information on how to navigate the path to a diagnosis. In addition, their list of Resources for genetic testing information may be helpful to patients seeking a diagnosis through genetic testing.

The Undiagnosed Diseases Network (UDN)

UDN is a research study backed by the National Institutes of Health Common Fund that brings together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies. UDN hopes to help individual patients and families living with the burden of undiagnosed diseases.

Global Resources

Global Rare Disease and Undiagnosed Resources

ClinicalTrials.gov

ClinicalTrials.gov is an online database of current, future and past clinical studies around the world that connects patients and physicians to information and clinical trial opportunities.

Rare disease help lines

Rare disease help lines offer rare disease patients with social, psychological and information solutions to the unique needs of rare disease patients. A list of help lines by country can be found here.