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Where Can I Get Information About a Particular Genetic Condition?

There are a number of resources available for people who want to learn more about specific genetic conditions. Below are some web sites that provide general medical information about specific conditions as well as sites that link to support groups for various conditions. Genetic support groups often have some of the most up-to-date and practical information available. They provide information for both families and medical professionals.

GENETICS EDUCATION CENTER
University of Kansas Medical Center

Searchable, comprehensive links to information about genetic conditions. Resources for teaching genetics, including links to human genome project information, news, lesson plans, more.

DOLAN DNA LEARNING CENTER
Cold Spring Harbor Laboratory

Basic, interactive information on a number of genetic disorders. This information includes the disorders’ inheritance, symptoms, cause, incidence, treatment.

ALLIANCE OF GENETIC SUPPORT GROUPS
1-800-336-GENE

International coalition of individuals, professionals, and genetic support organizations that provides you with connections to support groups, educational resources, recent research information, and other informative web sites.

MARCH OF DIMES

Information on specific birth defects and by helping you find other resources as well as appropriate support groups.

GENE TESTS

Up-to-date articles on various genetic conditions for health care providers. Once at the home page, choose Gene Reviews and type in the name of the genetic condition.

MEDLINE PLUS

Links to information on a variety of genetic conditions as well as background information on genetics, genetic services, genetic testing.

NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)

Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, service.

GENETIC AND NEWBORN SCREENING RESOURCE CENTER OF THE UNITED STATES

Provides information and resources in the area of newborn screening and genetics to benefit health professionals, the public health community, consumers and government officials.


Genetics Clinics - How can I find an Idaho genetics specialist or genetic counselor?

General Genetics—Pediatric and Adult

Genetic Services Program

Department of Health and Welfare, Boise, ID
Genetics Board Certification: Genetic Counseling, General Genetics
Appointments: Telephone: (208) 381-7339
These Clinics Provide Services In: General Genetics and Metabolics
Questions: Contact clinic staff at (208)381-7339 

Prenatal Genetic Counseling

St. Luke’s Maternal Fetal Medicine
Perinatal Services, Boise, ID
Genetics Board Certification: Genetic Counseling
Other Board Certification: Obstetrics-Gynecology
Appointments: Telephone: (208) 381-3088 Fax: (208) 381-4314
This Clinic Provides Services In: Prenatal Diagnosis
Questions: Contact Heidi Nagel MS CGC (208) 381-3088 nagelh@slrmc.org or Jennifer Eichmeyer eichmeyj@slrmc.org

Cancer Genetic Counseling

St. Luke’s Mountain State’s Tumor Institute Appointments
: Telephone (208) 381-2734 Fax: (208) 381-3276 Questions: Contact Jennifer Eichmeyer MS (208) 381-2734 eichmeyj@slrmc.org
St. Alphonsus Cancer Treatment Center Prevention, Early Detection and Genetics Program Appointments: Telephone: (208) 367-4222 Fax (208) 367-4164 Questions: Contact Debra Mercy MS, CRNP, AOCN (208) 367-2273 or 1-866-208-3677 debrmerc@sarmc.org

Genetic Service Providers Outside Idaho

These provide searchable databases of genetic clinics and genetic counselors throughout the country and around the world.

Gene Tests
 
On the home page, choose the clinic directory button.

National Society of Genetic Counselors

On the home page, choose "Find a Counselor." 

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