Rhode Island Department of Health Genetics Website

Genetic Resources in Rhode Island

Genetic Counseling & Medical Genetics Services – patient services for genetic risk assessment and the evaluation and testing of suspected or known genetic disorders

Laboratories – perform testing on blood, tissue or amniotic fluid samples

Support Services – community-based groups for patients and families with genetic disorders/diseases

Web Links

• genetics information sites and support groups on the Internet 

 Genetic Counseling & Medical Genetics Services 

• Prenatal Diagnostic Center

Women & Infants Hospital
79 Plain Street
Providence, RI 02903
Phone: 401-453-7510
Fax: 401-453-7517
Offers screening, diagnostic and genetic counseling during pregnancy

• Genetic Counseling Center

Director: Dianne Abuelo, MD
Rhode Island Hospital
593 Eddy Street
Providence, RI 02903
Phone: 401-444-8361
Fax: 401-444-3288
Provides genetics counseling and diagnostic services for children, adults and families with histories of birth defects or genetic disorders

• Greystone / Radiologic Associates

Obstetrician Geneticist: Kathryn McGowan, MD, MS
235 Plain Street
Providence, RI 02905
Phone: 401-272-8510
Fax: 401-272-0315
Provides genetic counseling, prenatal testing and diagnosis and pre-conception evaluations. 

• Child Development Center

Hasbro Children's Hospital
593 Eddy Street
Providence, RI 02903
Phone: 401-444-5685
Fax: 401-444-6115
Web Site: http://www.lifespan.org/Services/ChildHealth/CDC/
Provides interdisciplinary, comprehensive care for children with developmental and learning problems

Laboratories

• Molecular and Cytogenetic Laboratory

Director: Umadevi Tantravahi, PhD
Pathology Department
Brown University
Women & Infants Hospital
Providence, RI 02905
Phone: 401-453-7537
Fax: 401-453-7547
Provides genetic analysis of amniocentesis and blood samples 

• Prenatal & Special Testing Laboratory

Director: Jacob Canick, PhD
Women & Infants Hospital
70 Elm Street, 2nd Floor
Providence, RI 02903
Phone: 888-AFP-MOMS
Web site: http://www.womenandinfantslab.com
Provides prenatal AFP analysis

Support Services

• March of Dimes Rhode Island

260 W. Exchange St., Ste. 2
Providence, RI 02903
Phone: 401-454-1911
Fax: 401-454-1970
Website: http://www.modimes.org/
Dedicated to improving the health of babies by reducing birth defects and Infant mortality.

• Early Intervention Program

RI Department of Health
3 Capitol Hill
Providence, RI 02908
Phone: 800-942-7434
Web site: http://www.health.ri.gov/family/ei/home.htm
Provides developmental testing and support services for families with children under the age of 3.  

• Special Education Program

Rhode Island Department of Education
255 Westminster Street
Providence, RI 02903
Phone: 401- 222-4600, Ext. 1-2504
Website: http://www.ridoe.net/Special_needs/Default.htm
Provides special education services for pre-school and school-age children in Rhode Island.

• Department of Human Services

Services for Children & Families
Children with Special Needs
600 New London Avenue
Cranston, RI 02920
Phone: 401-462-5300
Website: http://www.dhs.state.ri.us/dhs/dserfch.htm
Provides services for children with special needs, including rehabilitation services, medical services and care for certain physical, behavioral, or developmental conditions.

• RIPIN

Rhode Island Parent Information Network
175 Main Street 1st Floor
Pawtucket, RI 02860
Phone: 401- 727-4144
800- 464-3399
Fax: 401- 727-4040
Website: http://www.ripin.org/
To empower, enable, encourage, and support parents to develop the knowledge and skills necessary to become equal partners in advocacy and education for their children. 

• Down Syndrome Society of Rhode Island

99 Bald Hill Road
Cranston, RI 02920
Phone: 401-463-5751
Website: http://www.dssri.org/index.html
Promoting the rights, dignity and potential of all individuals with Down syndrome through advocacy, education, public education and support.

• Cystic Fibrosis Foundation:

Massachusetts/Rhode Island Chapter
Natick, Massachusetts
Phone: 508-655-6000
800-966-0444
e-mail: mass-ri@cff.org
Website: http://www.cff.org/
Promoting the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. 

• American Cancer Society

222 Richmond Street
Suite 200
Providence, RI 0293
Phone: 401-722-8480
Fax: 401-421-0535
Website: http://www.cancer.org/
A nationwide, community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service.

• The Rhode Island Cancer Council, Inc.

249 Roosevelt Avenue
Suite 201
Providence, RI 02860
Phone: 401-728-4800
Fax: 401-728-4816
Email: info@ricancercouncil.org
Website: http://www.ricancercouncil.org/index.htm
To help Rhode Island residents find cancer facilities, clinical trials, oncologists, support groups, and cancer-related web resources which offer sound, medically proven advice. 

• Rhode Island Commission on Women, Health Committee

260 West Exchange Street
Suite 4
Providence, RI 02903
Phone: 401-222-6105
Fax: 401-222-5638
The mission of the Health Committee of the RICW is to enhance the health and improve the quality of life of women and girls in the State of Rhode Island.

• Rhode Island Breast Cancer Coalition

2 Coventry Shoppers Park
Coventry, RI 02816
Phone: 800-216-1040

WEB Links

Genetics Information Sites:

• Blazing a Genetic Trail is an overview of genetic diseases
• GeneClinics profiles common genetic diseases and syndromes, highlighting diagnosis, management, and the availability of testing.
• OMIM (Online Mendelian Inheritance in Man) maintains a large searchable database of genetic diseases, disorders, and traits and their different manifestations.
• The CDC (Centers for Disease Control and Prevention) has an informational site about research and policy with a lot of good links
• The Genetics Societies site has information about licensing of genetics providers
• The Wrightslaw site has information about effective advocacy for children with disabilities.
• Access Excellence is an educational program high school science teachers, and contains a lot of good genetics information.
• NERGG (New England Regional Genetics Group) promotes the use of high quality human genetic services and to encourage genetic education in New England.
• MCHB (Maternal Child Health Bureau) Genetics Services Branch facilitates the early identification of individuals with genetic conditions and integrate them into systems of service and care that are accessible
• Gene Cards is a searchable database of human genes, their products, and their involvement in diseases.
• Hersource is a breast cancer awareness site
• National Center for Genome Resources (NCGR) has general information on ethics, policy and education.
• Information for Genetic Professionals provides general information with research links.

Support Sites

• Directory of Online Support Groups has an extensive listing of genetic disease support groups
• The Alliance of Genetic Support Groups brings together a large number of support groups
• Genetic Conditions / Rare Conditions Support Groups --disease-based list of support groups including contact information and websites
• NORD, The National Organization for Rare Disorders, has a lot of information for families
• MUMS matches families with similar diagnoses
• Rare Genetic Diseases in Children has a lot of information and an in-depth layman’s guide to genetic disease
• Family Village is an excellent parent to parent site
• Exceptional Parent Magazine is a publication for parents with special needs children