GENERAL RESOURCES

The Southwestern Ohio Hemophilia Foundation works to connect individuals and families living with bleeding disorders to resources that will improve the quality of their life. If you can’t find what you were hoping for, please send us an email or call and we will help to connect you to what you need. If you know of a resource that should be listed here, but isn’t, let us know at info@swohf.org     What we can help with:

• Education
• Connecting to a family with a similar experience
• Human Service resources
• Social Workers
• Events
• Community support
• Insurance challenges
• Working with your provider
• Understanding bleeding disorder pharmacies  

Bleeding Disorders Substance Abuse and Mental Health Access Coalition   www.bdsumhac.org 

The Bleeding Disorders Substance Use & Mental Health Access Coalition (BD SUMHAC) was founded in January, 2022 by leaders in the bleeding disorders community with the goal of improving access to inpatient and residential mental health (MH) and substance use disorder (SUD) treatment for people with bleeding disorders. Today, it is a national multi-stakeholder coalition that includes members from the Hemophilia Federation of America, the National Bleeding Disorders Foundation, hemophilia treatment centers, local bleeding disorders chapters and member organizations, and the bleeding disorders community.  If you or a loved one has been denied access to a SUD or MH treatment facility due to their bleeding disorder, please contact the BD SUMHAC advocates at our national bleeding disorder organizations:  Ryan Faden, National Bleeding Disorders Foundation   (929) 687-3462, rfaden@hemophilia.org

National Bleeding Disorders Foundation   www.bleeding.org    212 328 3700
 
The National Bleeding Disorders Foundation (formerly NHF) is the national parent organization of which SWOHF is a chapter. The NBDF puts on a number of great programs every year including an annual meeting each fall.  The NBDF is also a great source of information about bleeding disorders. They have a range of publications and other resources for individuals with bleeding disorders and their families which you can check out here.  The NBDF First Step Program is a stellar resource for families with newly diagnosed children.

Hemophilia Federation of America  www.hemophiliafed.org    800 230 9797
 
The Hemophilia Federation of America is a national nonprofit organization that assists and advocates for the bleeding disorders community.  The HFA is primarily involved with advocacy at the state and national level.

Centers for Disease Control and Prevention     www.cdc.gov/ncbddd/hemophilia/index.html

The Centers for Disease Control and Prevention’s website is a great place to learn the basics about hemophilia and other bleeding disorders. They also are the primary source for current data and statistics related to bleeding disorders, and have a page that links to many great free materials available on the web.

Save One Life    www.saveonelife.net​​​​​​    978-352-7652   

Caring for people with bleeding disorders in developing countries--one life at a time.  Our Vision: All people with bleeding disorders in developing countries have the medical and economic resources necessary to live independent and productive lives. Mission Goals: To raise public awareness about people with bleeding disorders in the developing world; To identify children and youth with bleeding disorders who need aid in developing countries; To provide financial support for beneficiaries' basic needs and preparation for adulthood; To offer sponsors and donors an opportunity to make a direct difference in the lives of people with bleeding disorders in developing countries; To partner with and mentor local bleeding disorder organizations through program funding

World Federation of Hemophilia   www.wfh.org   514 875 7944

The WFH is dedicated to improving the lives of people with hemophilia and bleeding disorders around the world. One of the WFH’s main goals is improving hemophilia care in developing countries around the world. 

Patient Notification System     www.patientnotificationsystem.org    1(888) UPDATE U

Please sign up for the Patient Notification System (PNS) to be notified directly about the latest recall or withdrawal of recombinant and plasma products. The System is confidential and time sensitive. It is administered by an independent third-party organization and is free of charge.