The National Organization for Rare Disorders (NORD) has added new, easy-to-print one-pagers on “Genetic Testing for Rare and Undiagnosed Diseases” in English and Spanish (“Pruebas Genéticas Para Enfermedades Poco Comunes Y No Diagnosticadas”) to the NORD Resource Library. We encourage patient advocacy organizations and healthcare providers to distribute these resources to patients and families.
Advances in genetic testing have made it possible to reduce the time to diagnosis for many people living with rare diseases. These new educational resources were created to increase awareness and understanding of genetic testing for people living with rare diseases and their families, from urban to rural areas and for families who primarily speak Spanish as well as those who speak English.
These new resources are adapted from the videos on “Genetic Testing for Rare and Undiagnosed Diseases” in English and Spanish (“Pruebas Genéticas Para Enfermedades Poco Comunes Y No Diagnosticadas”) released earlier this year. NORD asked the rare community via social media and outreach to its member organizations and Rare Disease Centers of Excellence network to share their questions about genetic testing to answer in the one-page infographics and videos. Answers to those frequently asked questions are presented in an engaging, animated format and cover topics such as “What genetic tests are used to diagnose rare diseases?” and “Why should I consider genetic testing for me or my child?”
These new resources on genetic testing were made possible through educational grants from Alnylam Pharmaceuticals, Horizon Therapeutics, and Sanofi. NORD is solely responsible for the content and partnered with Osmosis from Elsevier for graphic design and animation.