Helpful Links
National Organizations
Below are national organizations. Visit for further information about bleeding disorders, and other resources.
World Federation of Hemophilia
International federation dedicated to promoting the high standards of medical care for hemophiliacs.
National Bleeding Disorders Foundation
NBDF makes an important difference in the lives of people and families with bleeding disorders.
Hemophilia Federation of America
Advocacy organization established for the purpose of serving as a patient advocate for, but not limited to, product safety, treatment, insurance and quality of life issues in a positive and pro-active manner.
Tools/Assitance
Below are links to tools, platforms, or other assistance to help with different aspects of living with a bleeding disorder.
Patient Services, Inc. (PSI)
Provides assistance with insurance premiums for qualifying individuals with chronic disorders.
Patient Notification System
Sign up for notification of factor/product recalls and other important up to date information regarding bleeding and clotting disorder medication alerts.
MedicAlert Foundation
MedicAlert Foundation is a nonprofit organization providing 24-hour emergency medical information and identification service.
UDC/ATHN, Patient Notification System
The industry-wide Patient Notification System informs people when a blood product is withdrawn or recalled.
LA Kelley Communications, Inc.
Provides tools and publications that speak to you, parent to parent, patient to patient, with the single goal of helping you master your world of bleeding disorders, plus other information like scholarships and community news.
Health
Below are links to helpful organizations and information that could aide in your health with a bleeding disorder.
HepC Connection
A Hepatitis C network and support system located in Denver, Colorado.
NBDF's Victory for Women
Victory for Women (V4W) is NBDF’s health initiative to address the critical issues faced by women with bleeding disorders.
NBDF's Medical and Scientific Advisory Committee (MASAC)
In 1954, the National Hemophilia Foundation formed a medical advisory council to advance clinical care and promote hemophilia research.
Committee of Ten Thousand
A central theme of the COTT is the development and implementation of programmatic initiatives which illuminate an empowerment road map for the diverse communities impacted by HIV/AIDS and other chronic diseases/disorders.
Education
Below are links to helpful organizations and information that could aide in your health with a bleeding disorder.
NBDF's Research Grants & Fellowships
NBDF funds Career Development Awards for projects that would yield scientific information contributing to a cure for bleeding disorders such as hemophilia and von Willebrand disease.
NBDF's Steps for Living
Steps for Living is your one-stop resource for information on bleeding disorders for kids, adolescents, parents and health educators to promote healthy living for the whole family.
Foundation for Women & Girls with Blood Disorders
Dedicated to education and awareness for women and young girls with bleeding disorders.
Emergency Readiness for People with Disabilities
To help people forced to quickly leave or be confined in their home unexpectedly. Blog about emergency preparedness.
Bad Blood
A Cautionary Tale – A documentary film by Marilyn Ness – Through the eyes of survivors and family members, BAD BLOOD chronicles how a “miracle” treatment for hemophilia became an agent of death for 10,000 Americans.