Resources
Here are some resources that may help you better understand bleeding disorders and provide some information to assist you and your family.
National Organizations
Company
Contact
Description
National Headquarters
National Hemophilia Foundation
7 Penn Plaza, Suite 1204
New York, NY 10001
Phone: (212) 328-3700
Fax: (212) 328-3777
HANDI: NHF’s Info Resource Center
HANDI Phone: (800) 42-HANDI
HANDI Fax: (212) 328-3799
HANDI Email: [email protected]
- NHF Medical and Scientific Advisory Council (MASAC)
- NHF Research Grants Program
Website:
www.hemophilia.org
The National Hemophilia Foundation exists to support communities all over the United States
My Life Our Future
Website:
www.mylifeourfuture.org
My Life, Our Future is a nationwide campaign for progress in hemophilia. Leaders in our community have come together to offer a free genotyping test, so that you may gain a deeper understanding of your hemophilia today, while helping to advance the breakthrough treatments of tomorrow.
Website:
stepsforliving.hemophilia.org
Prevent Complications of Bleeding Disorders.
National Hemophilia Foundation Victory for Women
Website:
www.hemophilia.org/Community-Resources/Women-with-Bleeding-Disorders/Victory-for-Women-with-Blood-Disorders
Victory for Women (V4W) is NHF’s health initiative to address the critical issues faced by women with bleeding disorders.
Hemophilia Federation of America
Hemophilia Federation of America
820 First St. NE, #720
Washington DC 200032
Toll Free: (800) 230-9797
Phone: (202) 675-6984
Fax: (972) 616-6211
Email: [email protected]
Website:
hemophiliafed.org
Highlights:
Patient Assistance Programs
Hemophilia Federation of America (HFA) is a community based organization that serves people with bleeding disorders and their families in the USA. With a broad mission to assist and advocate, HFA provides programs, services and policy education and support through its Member Organization affiliations as well as direct to consumers.
World Federation of Hemophilia
World Federation of Hemophilia
1425 René Lévesque Blvd. W.
Suite 1010
Montréal, Québec
H3G 1T7 Canada
Phone: +1 (514) 875-7944
Fax: +1 (514) 875-8916
E-mail: [email protected]
Website:
www.wfh.org
The World Federation of Hemophilia improves and sustains care for people with inherited bleeding disorders around the world.
Additional Supporting Organizations and Resources
Company
Contact
Description
Centers for Disease Control (CDC)
Website:
www.cdc.gov Facts
The mission of the CDC’s Division of Blood Disorders is to reduce the mobility and mortality from blood disorders through comprehensive public health practice.
Patient Notification System
Website:
www.patientnotificationsystem.org
The Patient Notification System is a free, confidential, 24 hour communication system providing information on plasma-derived and recombinant analog therapy withdrawals and recalls.
MedicAlert Foundation
2323 Colorado Avenue
Turlock, CA 95382
Phone: (888) 633-4298
Website:
www.medicalert.org
As a global charity, we focus on the well-being of others. We give you the freedom to live fearlessly, confident in the coverage we provide as the world’s most dependable medical identification and information network.
Patient Services Incorporated
Website:
www.patientservicesinc.org
Patient Services, Inc. (PSI) is the “ground breaking” 501(c)(3) non-profit, charitable organization of its kind. Over two decades ago, we recognized the importance of providing a “safety net” for patients with chronic illnesses who were struggling to keep up with expensive premiums and copayments.
LA Kelley Communications
LA Kelley Communications, Inc.
65 Central Street
Georgetown, Massachusetts 01833 USA
Phone: 1 (978) 352-7657
Fax: 1 (978) 352-6254
Email: [email protected]
Website:
www.kelleycom.com
LA Kelley Communications was founded in 1990 with the belief that any individual facing hardship, adversity or challenges-when given the right tools-can overcome, triumph, and even grow stronger in character and confidence.
CK Colburn Keenan Foundation, Inc.
Website:
www.colkeen.org
KEENAN FOUNDATION, INC. is a charitable organization dedicated to improving the health and well being of individuals and families living with chronic illnesses, with priority placed on those living with bleeding disorders.
Wingmen Foundation, Inc.
Wingmen Foundation, Inc.
1425 René Lévesque Blvd. W. Suite 1010
Montréal, Québec
H3G 1T7 Canada
Phone: +1 (514) 875-7944
Fax: +1 (514) 875-8916
E-mail: [email protected]
Website:
www.wingmenfoundation.org
Rare Coagulation Disorders Resource Room
Website:
www.rarecoagulationdisorders.org
The Resource Room provides current and searchable information on the basic science, clinical management, available laboratory and genetic testing, clinical trials, and global research initiatives for these very rare and heterogeneous coagulation disorders.
Foundation for Women and Girls with Blood Disorders
Website:
www.fwgbd.org
The Foundation for Women & Girls with Blood Disorders seeks to ensure that all women and adolescent girls with blood disorders are correctly diagnosed and optimally treated and managed at every life stage.
South Carolina Hemophilia Program
Website:
www.scdhec.gov Hemophilia Assistance Plan
Individuals with hemophilia who are eligible for the program may receive Factors VIII and IX blood clotting factor products and related supplies such as syringes and needles when ordered by a physician.