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.
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.
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.
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.