Bleeding Disorder Resources

World Federation of Hemophilia - International federation dedicated to promoting the high standards of medical care for people with bleeding disorders. www.wfh.org

National Hemophilia Foundation - NHF makes an important difference in the lives of people and families with bleeding disorders. www.hemophilia.org

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. www.hemophiliafed.org

HepC Connection - A Hepatitis C network and support system located in Denver, Colorado. www.hepc-connection.org

patientnotificationsystem.org - Sign up for notification of factor/product recalls and other important up to date information regarding bleeding and clotting disorder medication alerts. patientnotificationsystem.org

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. www.kelleycom.com

Patient Services, Inc. (PSI) - Provides assistance with insurance premiums for qualifying individuals with chronic disorders. www.patientservicesinc.org

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. www.cott1.org

medicalert.org - MedicAlert Foundation is a non-profit organization providing 24-hour emergency medical information and identification service. www.MedicAlert.org

Bad Blood - A Cautionary Tale - A documentary film by Marilyn Ness - Through the eyes of survivors and family members, BAD BLOOD chronicles how treatments for hemophilia became an agent of death for 10,000 Americans. Get more information on HFA website. Link to BAD BLOOD: A Cautionary Tale - Documentary trailer. Link to streaming device.

NHF’s Research Grants and Fellowships - NHF 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. www.hemophilia.org

NHF’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. www.hemophilia.org

UDC/ATHN, Patient Notification System - The industry-wide Patient Notification System informs people when a blood product is withdrawn or recalled. www.hemophilia.org

NHF’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. www.hemophilia.org

NHF’s Victory for Women - Victory for Women (V4W) is NHF’s health initiative to address the critical issues faced by women with bleeding disorders. www.hemophilia.org

Resource Guide to Health Care Options in Pennsylvania - A free resource describing numerous no-cost or low-cost health care options available to Pennsylvania residents has been updated and published by the Pennsylvania Office of Rural Health and Penn State Extension. A free copy of the resource guide is available on the Pennsylvania Office of Rural Health’s website (www.porh.psu.edu) under the link to “Publications.” download pdf