Improving quality of life for those living with bleeding disorders

GENERAL RESOURCES

The Southwestern Ohio Hemophilia Foundation works to connect individuals and families living with bleedings 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.

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


If you know of a resource that should be listed here, but isn’t, let us know at
info@swohiohemophilia.org


National Hemophilia Foundation
212 328 3700
www.hemophilia.org

The National Hemophilia Foundation is the national parent organization of which the SWOHF is a chapter. The NHF puts on a number of great programs every year including an annual meeting each fall.  The NHF 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 NHF First Step Program is a stellar resource for famlies with newly diagnosed children.



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.



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

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.



Hemophilia Federation of America
800 230 9797
www.hemophiliafed.org

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.



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

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.