National Organizations | Comprehensive Centers

National Organizations

National Center for Education in Maternal and Child Health
2000 15th Street, North, Suite 701
Arlington, VA 22201-2617
Phone: 703-524-7802

National Heart, Lung, and Blood Institute (NHLBI), a part of the Federal Government's National Institutes of Health.

Sickle Cell Disease Scientific Research Group
6701 Rockledge Drive, MSC 7950
Bethesda, MD 20892-7950

(for overnight couriers -> FED EX, UPS, etc.)
Sickle Cell Disease Scientific Research Group
Rockledge Two Center, 10th Floor, Room 10042 D
6701 Rockledge Drive
Bethesda, MD 20817
Phone: 301-435-0055
Fax: 301-480-0868

NIH Sickle Cell Cell Center - This site list all of the federally funded centers with email addresses and locations.

Sickle Cell Disease Association of America - A state by state listing of member chapters where you can obtain sickle cell information and local referrals.
16 S. Calvert St., Suite 600
Baltimore, MD 21202
Phone: 1- 800-421-8453
310-216-6363
Fax: 310-215-3722

Genetic Disease Resource Center
California State Department of Health Services Genetic Disease Resource Center
2151 Berkeley Way, Annex 4
Berkeley, CA 94704
Phone: 510-540-2534

The National Newborn Screening and Genetics Resource Center (NSGRC)
Hemoglobinopathy Referral Laboratory
Children's Hospital Oakland
Medical Director: Carolyn Hoppe, MD
747 52nd Street
Oakland, CA 94609
Phone: (510) 428-3193
E-mail: choppe@mail.cho.org

NSGRC is sponsoring a hemoglobinopathy referral laboratory at Children's Hospital and Research Institute at Oakland (CHORI Hb Lab) to assist in second tier analysis and confirmatory testing related to newborn screening hemoglobinopathy results.

This contract is intended to assist states in confirming the presence of suspected hemoglobin variants on the initial filter paper specimen. The CHORI Hemoglobinopathy referral laboratory can also provide analytical information on whole blood samples in order to identify hemoglobin variants not previously observed or needing additional testing for confirmation.

A primary objective of this contract is to determine if such reference services are needed by the screening laboratories, as this service was previously provided by the CDC, but discontinued over 10 years ago. Please consider using this contracted service to help us determine if the need exists and to assist you in your screening efforts. There is no charge for the service at the present time.

Please contact Dr. Carolyn Hoppe at the address above if you would like additional information.

STOP STUDY - Stroke Prevention Centers - These center can perform Trans-Cranial Doppler Ultrasound to detect those children at high risk of having a stroke.

Council of Regional [Genetics] Networks (CORN)