Resources

NonProfit Organizations

CHES Foundation
CHES is the only national non-profit in the bleeding disorder space whose mission continuously offers meaningful, instructive, and consistent education for Inhibitors, the ultra-rare community and women since 2009.

The Coalition for Hemophilia B
A national nonprofit serving the hemophilia B community for over 35 years.

Hemophilia Federation of America
The vision of the Hemophilia Federation of America is to improve the care and quality of life for all people with bleeding disorders by removing barriers to diagnosis, treatment, and cure.

Mental Health
Mental health resources for persons with bleeding disorders from Mental Health Matters Too.

The National Bleeding Disorders Foundation
We work to improve the lives of people with bleeding disorders.

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

Save One Life
Save One Life improves the quality of life and future of people with bleeding disorders in developing countries through direct financial assistance.

Patient Assistance Programs

The Pan Foundation
Copay and premium assistance funds for hemophilia A and B with and without inhibitors, von Willebrand’s disease (copay assistance), and travel grants. PAN has developed a free resource to simplify the search for financial assistance for all charitable programs. It is accessible at www.fundfinder.org.

Patient Services Inc. (PSI)
Offers copay assistance and premium assistance.

The Assistance Fund (TAF)
Offers copay assistance and premium assistance for hemophilia A and B.

Drug Manufacturer Patient Assistance Programs
Link to NHF’s website with a comprehensive listing of patient assistance programs.

Scholarships
Link to the Florida Hemophilia Association’s listing of academic scholarships.

Clinical Trials

CDC Hemophilia Clinical Trials
A link to hemophilia clinical trials

CDC von Willebrand disease Clinical Trials
A link to von Willebrand disease clinical trials

Education

Teen and Girls Brochure
This brochure covers basic topics of puberty, changes, periods, bleeding disorders, and a glossary.

A Guide for Girls with Bleeding Disorders
In this brochure, the NHF discusses types of bleeding disorders, puberty, and menstruation.

Communication Tools

Menstruation Tracker
The Hemophilia Federation of America provides digital and printable tracking tools for women, girls, people with the potential to menstruate, people with bleeding disorders, and those who have not been diagnosed yet. These thoughtfully prepared tools can help you record your bleeding experience.

Health Care Diary
Before visiting with your healthcare provider, keeping a health diary for a month or two may be helpful. This PDF will help you discuss with your healthcare provider the next steps.

Questions to Ask
Checklist of questions to help prepare for a visit with a healthcare provider.

Exercise

Hemophilia Friendly Workouts
Twenty hemophilia-friendly workouts built to match your mood and energy level courtesy of Novo Nordisk.