NORD’s Rare Disease Video Library provides brief introductions to rare disease patient registries and natural history studies.
Approximately 80% of rare disorders are genetic, and most are caused by variants in specific genes. New therapies in development and under evaluation in clinical trials are increasingly being targeted to patients with specific gene variants. Eligibility for many clinical trials requires that patients know what gene variants they have. Patients and families are sometimes unaware that genetic testing can provide important information relevant to decisions about treatment options.
These new educational resources were created to increase awareness and understanding of genetic testing for people living with rare diseases and their families.
The information is presented in an engaging animated format and covers topics such as “How can genetic testing give me more options to participate in research?” and “What does the genetic testing process look like and why is genetic counseling important?”.
