Community Organization:
- Committee of Ten Thousand
- Hemophilia Federation of America
- LA Kelly Communications, Inc.
- Save One Life
- National Hemophilia Foundation
- Patient Notification System
- Plasma Protein Therapeutic Association (PPTA)
- The Coalition for Hemophilia B, Inc.
- The World Federation of Hemophilia
- Steps for Living (Education for all Stages of Life)
Factor and Ancillary Items Assistance Programs:
- Medic Alert Bracelets
- Aptevoo Ixinity Assistance Program
- Bayer Jivi Assistance Program
- Bayer Kogenate Assistance Program
- Bayer Kovaltry Assistance Program
- Bioverativ Alprolix Assistance Programs
- Bioverativ Eloctate Assistance Programs
- BPL Coagadex Assistance Program
- Medic Alert Bracelets
- CSL Behring Support and Assistance
- Genentech Hemlibra Access Solutions
- Grifolis Alphanate Assistance Program
- Novo Nordisk Novoeight Patient Support
- Novo Nordisk NovoSeven Patient Support
- Octapharma Nuwiq Assistance Program
- Octapharma Wilate Assistance Program
- Pfizer Hemophilia Village
- Shire Hematology Support Center
Government Sites:
- Center For Disease Control and Prevention
- HHS Advisory Committee on Blood Safety and Availability
- National Institutes of Health
- Office of Pharmacy Affairs – 340B Program
- U.S. Food and Drug Administration
- US Department of Health and Human Services
- Veterans Health Administration
Health Care Accreditation Programs:
- Community Health Accreditation Program (CHAP)
- Joint Commission on Accreditation of Healthcare Organizations (JCAHO)
- Utilization Review Accreditation Commission (URAC)
- Accreditation Commission for Healthcare (ACHC)
Hemophilia and von Willebrand Health:
- Hemophilia Treatment Centers
- Understanding Hemophilia: The Basics
- von Willebrand Disease
- The American Academy of Pediatrics
- The Dolan DNA Learning Center
- Products that contain Aspirin
Hepatitis and HIV Organizations:
- AIDS.org
- American Liver Foundation
- The Body.com, The complete HIV/AIDS Resource
- The Hepatitis Foundation
Insurance and Disability Information:
Product Manufacturers/Distributors:
- Shire
ADVATE
ADYNOVATE
BEBULIN VH
FIEBA VH
HEMOFIL M
PROPLEX T
RECOMBINATE
VONVENDI
- CSL Behring
AFSTLYA
HELIXATE FS
HUMATE P
IDELVION
MONONINE
STIMATE
- Grifols USA
ALPHANATE
ALPHANINE SD
PROFILNINE SD
- Novo Nordisk Pharmaceutical
NOVOSEVEN
NOVOEIGHT
- Pfizer
BENEFIX
XYNTHA
- Xanodyne Pharmaceuticals, Inc.
AMICAR
Resource for Expired Factor and Ancillary Donation:
Women with Bleeding Disorders
National Hemophilia Foundation Resources
- www.betteryouknow.org
- https://www.hemophilia.org/Community-Resources/Women-with-Bleeding-Disorders
- https://hemaware.org/womens-health
- Snapshots of VWD Guidelines | National Hemophilia Foundation
Hemophilia Federation Resources
- https://www.hemophiliafed.org/
- https://www.hemophiliafed.org/for-patient-families/resources/toolkits/women-bleed-too-toolkit/
Hemophilia A Carriers Demonstrate of Structural Joint Changes
CSL Behring Stimate Recall
- https://ashpublications.org/bloodadvances/article/5/1/280/474888/ASH-ISTH-NHF-WFH-2021-guidelines-on-the-diagnosis
- ASH ISTH NHF WFH 2021 guidelines on the management of von Willebrand disease | Blood Advances | American Society of Hematology (ashpublications.org)
Make sure to check with your local hemophilia chapters for any support groups, program or events.