New NORD Resources Address this Question
The National Organization for Rare Disorders (NORD) has published new animated videos in English and Spanish about why rare disease patients should get genetic testing if they already have a diagnosis. These are available in the NORD Rare Disease Video Library and NORD YouTube channel. One-page infographics on this topic in English and Spanish have also been added to the NORD Resource Library.
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?”
These new videos and infographics on genetic testing were made possible through an educational grant from Alltrna. NORD is solely responsible for the content and partnered with the National PKU Alliance for content development and with Osmosis from Elsevier for video production.
The NORD Rare Disease Video Library features videos on rare diseases and related topics for patients, caregivers, students, professionals and the public. Start learning today and share these resources with relevant people in your network.
