Bernard-Soulier Syndrome Organization

Resources for Persons with Bernard-Soulier Syndrome or other Bleeding Disorders. 

Centers for Disease Control and Prevention 
Hematologic Diseases Branch 
1600 Clifton Road Atlanta, GA 30333 
Ph: 404.639.3311 Public Inquiries Ph: 404.639.3534 Toll-free: 800.311.343 

National Institute of Health 
National Heart, Lung, and Blood Institute 
For all health-related questions and requests for copies of publications, please contact a trained information specialist at the NHLBI Information Center. Include a current postal address, since many resources are available only as printed publications. 

NHLBI Health Information Center 
P.O. Box 30105 
Bethesda, MD 20824-0105 
Ph: 301.592 8573 TTY: 240.629.3255 Fx: 301.592.8563 

The Americans with Disabilities Act Information Line 
Disability Rights Section, Civil Rights Division, US Department of Justice 
P.O. Box 66738 
Washington, DC 20035-6738 
Ph: 800.514.0301 TTY: 800.514.0383 
www.ada.gov


Private Agencies and Foundations 

American Association of Blood Banks 
www.aabb.org 


American Society of Hematology 
1900 M Street NW, Suite 200 
Washington, DC 20036 
Ph: 202.776.0544 Fx: 202.776.0545 
www.hematology.org


Hemophilia Federation of America 
102 B Westmark Blvd. 
Lafayette, LA 70506 
Ph: 800.230.9797 Fx: 337.991.0087 
www.hemophiliafed.org

 
National Organization of Rare Diseases (NORD) 
55 Kenosia Avenue, PO Box 1968 
Danbury, CT 06813-1968 
Ph: 203.744.0100 Toll-free: 800.999.6673 
(voice mail only) TDD: 203.797.9590 Fx: 203.798.2291 
www.rarediseases.org E-mail: orphan@rarediseases.org


The National Hemophilia Foundation 
110 Greene Street, Suite 303 
New York, NY 10012 
Ph: 800.42.HANDI 
www.hemophilia.org


The World Federation of Hemophilia 
1425 Rene Levesque Blvd., W. 
Montreal, QC H3G177, Canada 
Ph: 514.933.7944 Fx: 514.933.8616 
www.wfh.org

Gene Therapy Web Sites

Human Genome Project Information 
www.ornl.gov/sci/techresources/Human_Genome/Home.shtml


National Human Genome Research Institute 
www.genome.gov


National Library of Medicine, National Institutes of Health 
www.nlm.nih.gov/medlineplus/genesandgenetherapy.html

NIH Office of Biotechnology Activities (OBA) 
www4.od.nih.gov/oba