JIRS: Nat'l Gaucher Foundation

Nat'l Gaucher Foundation

Nat'l Gaucher Foundation
10427 Montrose Ave #1

Bethesda, MD 20814

Phone #:(800) 925-8885 Medical Director
Phone #:(800) 504-3189 Executive Director
Phone #:(800) 925-8885 Sharon Adams for questions
Phone #:
Phone #:
Fax Number:(770) 934-2911 ;

Web Page: www.gaucherdisease.org
E-mail: robinbmd@aol.com

Program/Service Notes:

President and Medical Director: Robin A. Ely, M.D
CEO/Executive Director: Rhonda P. Buyers rhonda@gaucherdisease.org 

The mission of the NGF is to find a cure for Gaucher Disease by funding vital research programs, to meet the ever- increasing needs of patients and families, as well as to promote community/physician awareness and educational programs. 

Carrier Testing
Approximately 1 in 60,000 people have Gaucher Disease. However, among Jews of Eastern European (Ashkenazi) descent, one in 450 people will have the disorder, and the carrier rate is approximately 1 in 15. Carrier status can be detected through a simple blood test. The testing process can be done at a hospital, Gaucher specialist’s office, or through your family physician. Laboratory assay tests use chromosomes, DNA, RNA, and genes to determine the genetic status of a person who is at high risk for a particular condition. 
Genetic Testing Website: www.genetests.org

Should you have any questions, please feel free to call Sharon Adams at 1-800-925-8885, or email her at Sharon@gaucherdisease.org.


For detailed information on genetic testing, please contact one of these testing sites. 

GenzymeGenetics,Cambridge, MA(800) 848-4436 

Mt.Sinai School of Med., NYC (866)322-7963 

NYU School of Med., NYC (212)263-8344 

Barbara Lichtenstein
Programs Director National Gaucher Care Foundation
CARE Program & CARE+PLUS Program, Care and Care+Plus.
Local contact Info:
Barbara Lichtenstein
267 Kentlands Blvd., Box 1084
Gaithersburg, Maryland 20878
(866) 346-8176
FAX: 301-963-4489
blichtenstein@comcast.net 

To make a donation, online at www.gaucherdisease.org/donate.php 
or:
National Gaucher Foundation
2227 Idlewood Road
Suite 12
Tucker, GA, 30084
Phone: (770)934-2910
Fax:(770)934-2911
Toll free 800-504-3189

Program Details:

Hours: Mon-Fri, 9-5

Person In Charge: President and Medical Director:Robin A. Ely

Eligibility: Anyone can request information

Fees: To Make a Donation, mail to: National Gaucher Foundation 2227 Idlewood Road, Suite 12 Tucker, GA, 30084 Toll free 800-504-3189

Service Area: World

Intake Process: Just call or e-mail

Operating Agency: Independent Organization (Not classified)

This information was last updated on 10/09/2007

This information is provided as is with no guarantee as to the accuracy of the information. Information is considered to be accurate as of the date of the last update, printed above. Jewish Information & Referral Service may not be held liable for misuse of this information.

Hours:	Mon-Fri, 9-5
Person In Charge:	President and Medical Director:Robin A. Ely
Eligibility:	Anyone can request information
Fees:	To Make a Donation, mail to: National Gaucher Foundation 2227 Idlewood Road, Suite 12 Tucker, GA, 30084 Toll free 800-504-3189
Service Area:	World
Intake Process:	Just call or e-mail
Operating Agency:	Independent Organization (Not classified)

Jewish Information and Referral Service