National Center Information Dissemination-Marketing-Promotion Brochures

For the past three years, we have created nationally-recommended and reviewed resources about Turner syndrome and Jacobsen syndrome, essentially creating a reliable library of resources about various genetic conditions for patients and providers to access online and in print at one location. To create these new resources and also update our materials about Down syndrome, we have organized a Genetic Conditions Consensus Group that includes representatives from the American Academy of Pediatrics, the American College of Obstetricians and Gynecologists, the American College of Genetics and Genomics, the National Society of Genetic Counselors, and the Association of University Centers on Disabilities, including invited patient advocacy group representation. For the update of the Down syndrome resource, AUCD has invited the National Down Syndrome Society and Down Syndrome Education International. We have also recently created web apps for both the Turner Syndrome and Down syndrome resources and provided translations in 8 different languages for the Down syndrome materials. These new resources and translations offer a tremendous value to the patient and provider communities to significantly improve the experience of new and expectant parents receiving a prenatal or postnatal diagnosis; to provide these families with a disability rights perspective across the lifespan; to reach the most vulnerable populations of families who do not speak English; and to fundamentally improve outcomes for people with disabilities as they learn at the first point on the lifespan about proper healthcare and available services/supports. However, we need to strategically advertise these materials to medical providers nationwide to ensure that they are utilizing the resources available to them. To accomplish this purpose, we need funding to create about 5,000 promotional brochures about our range of resources to share with medical providers (specifically prenatal genetic counselors, geneticists, and maternal-fetal medicine specialists) through direct mailings, email/social media promotions, and conference distributions. In addition, we need funding to revise our translations to include the most recent updates to the Down syndrome resource. Through these efforts, we aim to increase the utilization of our resources by 20% and also advertise the leadership of the Kennedy Foundation on the brochures.