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Other Organizations and Educational Resources

Emergency Preparedness resources for people with bleeding disorders from the National Hemophilia Foundation.

Patient Notification System is a free, confidential, 24-hour communication system providing information on plasma-derived and recombinant therapy withdrawals and recalls.

INSURANCE, PREMIUM ASSISTANCE, AND OTHER ASSISTANCE PROGRAMS

Accessia Health (formerly Patient Services, Inc. – PSI) has patient assistance programs to help patients with subsidizing the cost of health insurance premiums, providing pharmacy and treatment copayment assistance, providing travel assistance, and more.

The Colburn Keenan Foundation Individual Grant Program provides assistance to meet urgent medical, basic survival, and quality of life needs, generally up to $2,000 per calendar year. This program is meant for urgent, rather than long-term needs.

Hemophilia Federation of America’s (HFA) Patient Assistance Portal for a variety of assistance resources. 

HFA’s Helping Hands Program has multiple programs:

The Emergency Assistance Program is designed to establish a rapid, non-invasive source of relief for emergency situations that are directly caused by or directly impacting a bleeding disorder. Emergency Assistance focuses on basic living expenses such as housing, transportation, and utility bills.

The Items Assistance Program helps with the cost of medically necessary items that are not covered by insurance or affordable out-of-pocket.

The Inhibitor Support Program assists individuals and families affected by inhibitors, recognizing that they are faced with unique medical and financial needs.

PAN Foundation helps underinsured people with life-threatening, chronic, and rare diseases get the medications and treatments they need by assisting with their out-of-pocket costs and advocating for improved access and affordability.

Patient Advocate Foundation (PAF) Co-Pay Relief provides direct financial assistance to insured patients who meet certain qualifications to help them pay for the prescriptions and/or treatments they need. This assistance helps patients afford the out-of-pocket costs for these items that their insurance companies require.

The Assistance Fund (TAF) independent charitable patient assistance organization that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses.

NATIONAL AND INTERNATIONAL ORGANIZATIONS

Coalition for Hemophilia B strives to make the quality of life the focal point of treatment for people with hemophilia B and their families through education, empowerment, advocacy, and outreach.

Committee of Ten Thousand (COTT) is a grass-roots, peer-led, educational, advocacy, and support organization for persons with blood disorders. The majority of their constituency is persons with hemophilia who contracted HIV/AIDS from tainted blood products.

Foundation for Women and Girls with Blood Disorders works to ensure all women and girls with blood disorders are correctly diagnosed and optimally managed at every life stage.

Hemophilia Federation of America (HFA) is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.

LA Kelley provides educational resources for individuals with bleeding disorders.

National Hemophilia Foundation (NHF) is dedicated to finding cures for inheritable blood disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive.

The Platelet Disorder Support Organization (PDSA) is dedicated to enhancing the lives of people with immune thrombocytopenia (ITP) and other platelet disorders through education, advocacy, research, and support.

Save One Life is dedicated to empowering individuals and families affected by bleeding disorders in developing countries through direct financial assistance and access to medical treatment.

World Federation of Hemophilia is an international nonprofit that supports the bleeding disorders community around the globe.

TREATMENT AND  MEDICATION/PRODUCT RESOURCES

ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world.

Pharmaceutical Medication Assistance Programs: Some pharmaceutical manufacturers offer assistance to help patients access their medications. This list is updated by the NHF but contact the manufacturers directly to request information about these programs.

Project SHARE (Supplying Hemophilia Aid and Relief) is a humanitarian program that donates blood-clotting medicine called factor to developing countries. Recipients are patients, doctors, clinics, and hospitals in countries where factor is scarce or unavailable.

Connect with Us

Please feel free to reach out to us if you’re interested in learning more about the Bleeding Disorders Foundation of North Carolina.