For patients affected by developmental disorders and rare genetic conditions, a diagnosis often raises even more questions. That's why, to complement the diagnostic, medical, and therapeutic care already offered at Kennedy Krieger Institute, we also provide genetic counseling for individuals and families hoping to better understand genetic disorders and the role of genetics in health and development.
Our Approach:
Working as part of the health care team, our genetic counselors strive to provide individuals with known or suspected genetic disorders with the answers and guidance they need. They provide compassionate, family-centered care and incorporate the most up-to-date knowledge and advanced genomic testing. Our genetic counselors also act as a resource for other health care professionals who have questions about genetic conditions, whether here at Kennedy Krieger or throughout the community.
Who We Serve:
Genetic counseling services are available to all patients at Kennedy Krieger. Our team has expertise in a wide range of genetic conditions. We also provide counseling and evaluations to individuals who lack a specific diagnosis, but whose symptoms might be related to a genetic condition. This includes, but is not limited to, individuals with neurodevelopmental disorders such as autism, developmental delay, intellectual disability, and epilepsy.
Our genetic counselors provide care in the Neurology and Neurogenetics Clinics as well as many other centers and rare disorder clinics throughout the Institute, including:
- Center for Autism Services, Science and Innovation
- Center for Development and Learning
- Center for Genetic Muscle Disorders
- Mitochondrial Medicine Center
- Moser Center for Leukodystrophies
- Osteogenesis Imperfecta Clinic
- Phelps Center for Cerebral Palsy
- Rett Syndrome and Related Disorders Clinic
- Angelman Syndrome Clinic
- Ataxia and Cerebellar Disorders Clinic
- Barth Syndrome Clinic
- Batten Disease Clinic
- Kabuki Syndrome and Epigenetic Disorders Clinic
- Synaptopathies Clinic
- Tuberous Sclerosis Clinic
What We Offer:
Genetic counselors provide a wide variety of services for individuals and families affected by known or suspected genetic conditions. Our genetic counselors can meet with you during you or your child's physician appointment or as a separate consultation. Telehealth visits are available for patients located in Maryland and neighboring states. This flexibility allows patients to receive comprehensive care in one location without the stress of traveling for multiple visits.
A typical genetic counseling session might include:
- Discussing the reason for the visit and your goals.
- Reviewing your family health history and any previous genetic test results.
- Helping you understand how genetic factors contribute to health and developmental disorders.
- Educating about the genetic condition and how it is inherited.
- Addressing questions about the chance of recurrence in future children, or risks to other family members.
- Providing emotional support to help you adjust to a diagnosis.
- Sharing resources for more information, advocacy, and support groups.
- Giving referral information to other appropriate medical clinics and programs.
If genetic testing is recommended for you or your child, our genetic counselors will explain the benefits and limitations of testing, guide you through decision-making, and meet with you for a follow-up visit to discuss the results and next steps. Our staff will coordinate all aspects of testing and assist with insurance pre-authorization.
Our Team:
Kennedy Krieger has a large team of genetic counselors who work in various multidisciplinary centers, clinics, and programs throughout the Institute. They have Masters degrees from accredited genetic counseling graduate programs with specialized training in medical genetics, psychology, counseling, public health, and research. Our genetic counselors are certified by the American Board of Genetic Counseling.
Resources:
- Genetic Counseling at Kennedy Krieger Institute Factsheet
- MedlinePlus “Help Me Understand Genetics"
Explanations of basic genetics concepts, inheritance, and other key topics. - National Society of Genetic Counselors
Information about genetic counselors, how to prepare for a genetic counseling appointment, and links to many resources. - National Organization for Rare Disorders
Resources for support, advocacy, and information about rare and undiagnosed disorders.
