When was the last time you were asked about genetics and hearing loss? Read on…. a new resource can help you respond to these questions, and it’s free!
The National Coordinating Center for the Regional Genetic and Newborn Screening Services Collaboratives (NCC), housed at the American College of Medical Genetics (ACMG), is excited to share with you a new free brochure, Hearing Loss, Genetics and Your Child.
The goal is to have the brochures available at the point of care, especially those settings where infants and children with newly diagnosed hearing loss are being evaluated (such as waiting rooms in primary care settings and ENT and Audiology centers), as well as in the hands of those parents seeking more information, especially when anxious or confused.
Why this brochure is so important: Most parents, and even some health professionals, are surprised to learn that 50% of hearing loss has a genetic basis. Furthermore, a child can have a genetic-related hearing loss even if no one in his or her family has hearing loss. Therefore, it is very important that parents follow through with referrals to a clinical geneticist—even as they are addressing their child’s hearing and communication issues. The Hearing Loss, Genetics and Your Child brochures are designed both to connect families with genetics professionals, and to prepare them for a genetics appointment, if deemed necessary. The brochure also answers other questions families may have, such as who will pay for genetic testing, and contains basic facts on genetics-related hearing loss.
Brochure development: Kathleen Arnos, PhD, FACMG, Professor of Biology and Genetics Program Director at Gallaudet University in Washington DC, led a team of medical geneticists, genetic counselors, audiologists, parent advocates, and health science information specialists to develop Hearing Loss, Genetics and Your Child. Dr. Arnos has been involved in providing genetics education to hearing loss professionals for nearly her entire career (and more recently to EHDI professionals) so you may be familiar with her educational programs and commitment to genetic services as part of the etiologic evaluation of hearing loss.
More about the free brochures and how you can get them: Hearing Loss, Genetics and Your Child is available in printed and downloadable pdf formats and has space for both individuals and professionals to input local resources. It is written at a low-literacy level and is available in both English and Spanish. Please take time to review the both the English and Spanish brochures attached to this email; they can also be accessed electronically at no cost at www.nccrcg.org under the “Resources” tab—and you may make copies. Print copies may also be ordered by contacting Matthew Tranter (email@example.com). The minimum order for printed copies is 100 brochures for $15.00, plus shipping and handling.
How you can go beyond the brochures and become part of the NCC/RC System: The NCC and the seven Regional Genetics and Newborn Screening Services Collaboratives are formed as cooperative agreements with the Maternal and Child Health Bureau of the Health Resources and Services Administration (MCHB/HRSA), Genetic Services Branch (GSB), to improve the health of children and their families by promoting the translation of genetic medicine into public health and health care services and making these services accessible to local communities. More information about the NCC and the HRSA Regional Genetics Collaboratives can be found on the web at www.nccrcg.org.
If you and the families you serve are not already involved with the NCC/RC system, we would be eager to work with you and serve as a “go to” resource for your public health genetics needs, as well as a conduit for building connections between public health, genetic specialists, primary care providers/Medical Home, and families.
Questions? If you have any further questions about the hearing loss brochures, or would like to connect with the National Coordinating Center, please contact us at 301-718-9603 or by email at firstname.lastname@example.org. We thank you for your support and efforts to broaden the dissemination of this important parent education tool so that more infants and children with hearing loss receive important genetic services.