The NYMAC DC Team joined efforts with DC’s Advocates for Justice and Education, Inc.’s to create a video project about the genetics journeys of local DC Families. Five DC families agreed to share their personal stories about how a genetics appointment helped them. The goal of this project is to raise awareness about genetic services in DC. We want to let other families know what to expect at a genetics appointment and help them feel more comfortable in starting their genetics journey. Let’s work together to help families explore how genetics can help them and their families.
DC Families Share their Genetics Journey (English and Español):
Contact Advocates for Justice and Education with questions: lajoy.johnson-law@aje-dc.org
BearGenes Videos on Genetics
Children’s National Hospital Rare Disease Institute has developed a number of videos in English and Spanish to help families better understand genetics and genetic services.
For additional videos on other topics, please visit the BearGenes website: https://www.childrensnational.org/get-care/departments/rare-disease-institute/resources-for-families/beargenes
Para informacion en español: https://www.childrensnational.org/get-care/departments/rare-disease-institute/resources-for-families/beargenes-spanish
Information on Sickle Cell
It is important to know if you have sickle cell trait. About 1 out of every 12 African Americans has sickle cell trait and about 1 out of every 100 Hispanics has sickle cell trait. However, it is possible for a person of any race or nationality to have sickle cell trait. Please click on the links below for more information:
Genetics Clinics in DC
Local Genetics Associations:
- Maryland and DC Society of Genetic Counselors (MDCGC) https://www.mdcgc.org
- Virginia Association of Genetic Counselors (VAAGC) https://www.vaagc.com
Resources for Children and Families with Genetic Conditions in DC:
Advocates for Justice and Education (AJE): Advocates for Justice and Education seeks to empower families, youth, and the community to be effective advocates to ensure that children and youth, particularly those who have special needs, receive access to appropriate education and health services. Home – Advocates for Justice and Education (aje-dc.org)
DC Department of Health (DOH): DC Health promotes health, wellness and equity, across the District, and protects the safety of residents, visitors and those doing business in our nation’s Capital. | doh (dc.gov)
DC Newborn Screening: All babies should be screened at birth for metabolic and hearing problems so that they can get the services they need as early as possible. Newborn Screening | doh (dc.gov)
DC Help Me Grow: HMG DC provides a free, confidential, centralized telephone access point that links every family in DC to a care coordinator that will answer questions and concerns about their pregnancy or child’s development, connect them with services in their community, and follow-up to ensure a connection is made. Help Me Grow DC | doh
DC Strong Start DC Early Intervention: The Strong Start DC Early Intervention Program serves as the single point of entry for infants and toddlers in Washington DC whose families have concerns about their development. Strong Start DC Early Intervention Program (DC EIP) | osse
DC Special Education Resources: Special Education Resource Hub: Special Education Resource Hub: What Families & Students Need to Know this Year | osse (dc.gov)
DC Department on Disability Services: The Department on Disability Services (DDS) provides the residents of the District of Columbia with information, oversight and coordination of services for people with disabilities and those who support them. | dds (dc.gov)
DC Children and Youth with Special Health Care Needs (CYSHCN) Program (CYSHCN):
DC Children and Youth with Special Health Care Needs (CYSHCN) Program (CYSHCN): The mission of the Children and Youth with Special Health Care Needs (CYSHCN) Program is to improve the health outcomes for children and youth with special health care needs by ensuring their access to coordinated primary and specialty health care and other services in partnership with their families and community organizations. Program services include: Family Navigation Services, Children and Youth with Special Health Care Needs (CYSHCN) District-wide Advocacy, Health Care Transition from Pediatric to Adult Services, District of Columbia Parent Information Network, and Sickle Cell Adolescent Transition Case Management. Children and Youth with Special Health Care Needs | doh (dc.gov)
DC Support for Women and Infant Health: DC’s Perinatal Health programs strive to eliminate preventable infant deaths and reduce preterm and low-birth-weight births: improving preconception health; assuring high-quality healthcare; strengthening families as they prepare and care for children; and, promoting safe and healthy environments. Perinatal Health | doh (dc.gov)
DC Medicaid: DC Medicaid is a healthcare program that pays for medical services for qualified people. It helps pay for medical services for residents with low-income and those with disabilities, including many genetic conditions. For those eligible for full Medicaid services, Medicaid pays healthcare providers. Medicaid | dhcf (dc.gov)
Explore other genetics resources for patients and families: Patients & Families | NYMAC (nymacgenetics.org)
