Resources

Hemophilia Nonprofit Organizations

American Association of Blood Banks
American Thrombosis and Hemostasis Network (ATHN)
Committee of Ten Thousand
Hemophilia Federation of America
The National Hemophilia Foundation (NHF)
*Documents approved by NHF’s Medical and Scientific Advisory Committee(MASAC)
*NHF’s Research Grants and Fellowships
National Organization for Rare Disorders (NORD)
World Federation of Hemophilia

Hemophilia Treatment Centers (HTC)

CDC HTC Directory

Children’s Cancer and Blood Disorders Center
601-Children’s Lane; Norfolk, VA 23507
757-668-7000

University of Virginia Health System
1215 Lee Street; Charlottesville, VA 22908
434-924-8499

VCU Medical Center;
1000 East Marshall St.
VMI Building, Rm. 333
Richmond, VA 23298
804-827-3306

Hepatitis and HIV/AIDS Organizations

Aids info
American Liver Foundation
American Association for the Study of Liver Diseases
The Foundation for AIDS Research
Hepatitis B Foundation
HIV and Hepatitis.com
HIV Positive.com
National Hepatitis C Coalition
NHF and the Hemophilia and AIDS/HIV Network for the Dissemination of Information (HANDI)

Important Government Organizations

Centers for Disease Control and Prevention
National Council on Disability
National Disability Rights Network
National Heart, Lung, and Blood Institute
National Institute of Allergy and Infectious Diseases
Office of Disability Employment Policy
U.S. Food and Drug Administration
U.S. House of Representatives
U.S. Senate
Universal Data Collection
Virginia General Assembly
Virginia Hemophilia Advisory Board

Note: The Virginia Hemophilia Advisory Board is a governor-appointed board that advises and assists the Virginia Department of Health in the administration of the Virginia Bleeding Disorders Program. The board includes representations from voluntary agencies interested in hemophilia, hematologists, blood banks/pharmacies, medical schools, hospitals, local public health agencies and the general public. Minutes of their annual meeting are available on www.vipnet.org .

Medical Links
MedScope
CBSHealthWatch
MedicineNet
eMedicine
WebMD

Other Organizations/Resources

Affordable Health Care Resource List
American Medical Association
American Society of Hematology

Camp Holiday Trails
Causes-of-Hemophilia
Coalition for Hemophilia B
Family Access to Medical Insurance Security Plan (FAMIS)
LA Kelley Communications
Medicaid - Virginia Department of Social Services
Patient Notification System
Patient Services Incorporated
Virginia Bleeding Disorders Program

Emergency Preparedness Resources

• Local and state health department

  www.hhs.gov, 1-877-696-6775 

• Centers for Disease Control and Prevention

  www.cdc.gov, 1-800-232-4636

• FEMA/ National government

  www.fema.gov, 1-800-621-FEMA

• Local Red Cross chapters

  www.redcross.org, 1-800-RED CROSS

• Federal Regional Director and Coordinators

  Contact NHF for this information   www.hemophilia.org

• United Way www.unitedway.org

 

-If you have a web site that you would like to add to this page, please email the webmaster at vahemophilia[at]verizon.net and the Public Affairs Committee will review the page and add it (if appropriate).