In the Leukodystrophy community, access to Genetic Services is fairly commonplace. It’s how we learn about our child’s specific type of Leukodystrophy (if the mutations are known) and learn more about what’s to come.
Lesa Brackbill has been a member of NYMAC’s Pennsylvania team working to develop resources to help guide families to genetics if it would be helpful for them. The flyer we created is below, and while it says Pennsylvania, it pertains to any state!
Here’s more about the project from NYMAC Regional Genetics Network:
Genetic services are an important component of healthcare. In order to help ensure that all families in Pennsylvania can access these services, the Pennsylvania team of the federally funded New York Mid-Atlantic Caribbean (NYMAC) Regional Genetics Network created two infographics, one aimed at families and one for healthcare providers, describing when a genetic referral may be appropriate and how genetic services can benefit a family. The family infographic is available in several languages. Both are accessible for screen readers and can be accessed and downloaded for free from our NYMAC Team PA webpage, which also includes many helpful resources for both families and providers: https://nymacgenetics.org/pennsylvania
These infographics are the result of a yearlong effort by the NYMAC PA team. Composed of local stakeholders including genetic and non-genetic healthcare professionals, family advocates and public health representatives, the team meets regularly to discuss the unique needs of families living in PAand identify the barriers they encounter when trying to access local genetic services.
Funded by a federal HRSA grant, NYMAC is one of seven regional genetics networks across the country that aims to improve access to genetic services in their jurisdiction, which include Pennsylvania. For more information about NYMAC and their regional efforts, please visit https://nymacgenetics.org/.
For many Newborn Screening conditions, including types of Leukodystrophy, genetic sequencing services are automatic. However, if you’re in the middle of a diagnostic odyssey, perhaps this could provide the answers you’re seeking.
Check out NYMAC (or the other regional genetics networks) to learn more!