Additional Resources — Lone Star Bleeding Disorders Foundation

Additional Resources

National Bleeding Disorders Foundation (NBDF)

Dedicated to finding better treatments and cures for bleeding disorders and to preventing the complications of these disorders through education, advocacy and research.
Hemophilia Federation of America (HFA)

A national nonprofit organization that assists and advocates for the bleeding disorders community. Their vision is that the bleeding disorders community will remove all barriers to both choice of treatment and quality of life.
World Federation of Hemophilia

An international not-for-profit organization dedicated to improving the lives of people with hemophilia and related bleeding disorders. They have developed a collection of Toolkits for many stages of life. Download informational pages and tools that you can share with teachers, ER staff, and more.
Medical and Scientific Advisory Committee (MASAC)

NBDF’s Medical and Scientific Advisory Council (MASAC) issues recommendations and advisories on treatment, research and other general health concerns for the inheritable blood and bleeding disorders community.
Victory for Women

Victoryforwomen.org is part of Victory for Women which is NBDF's health initiative that creates and provides support, education and resources for women and providers in the bleeding disorders community. The main goal is to address critical issues and ultimately improve quality of life for women in the community.
Committee of Ten Thousand (COTT)

A grass-roots, peer-led, education, advocacy and support organization for persons with HIV disease. The majority of their constituency is persons with hemophilia who contracted HIV/AIDS from tainted blood products.
Research Grants Program

From basic science to clinical care, NBDF’s research programs focus on finding better treatments and improving care for all inheritable blood disorders.
Patient Notification System

A free, confidential, 24-hour communication system providing information on plasma-derived and recombinant analog therapy withdrawals and recalls.
Steps for Living

Provides basics of bleeding disorders no matter what life stage. NBDF’s Steps for Living provides the essential facts needed.
Better You Know

NBDF’s Betteryouknow.org is a website for women and men who may experience symptoms of a bleeding disorder but have not been diagnosed. Includes risk assessment, tools, and other information to learn whether you are at risk for a bleeding disorder and the next steps you can take to seek care.
Medic Alert Foundation

The original medical ID company that provies 24/7 emergency services.
American Medical ID

Medical ID company partnering with LSBDF to give patients 10% off their purchase and gives 10% back to the Chapter. Enter LONESTAR at checkout.
LA Kelley Communications (PEN Newsletter)

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.
Accessia Health (formerly Patient Services, Inc.)

Accessia Health is a nonprofit 501(c)(3) organization that provides programs and services to those living with rare or chronic health conditions. They provide case management, education, and financial support for health insurance premiums, medication copayments, travel, and other essential medical expenses.
Center for Biologics Evaluation and Research (CBER)

The Center for Biologics Evaluation and Research (CBER) regulates the collection of blood and blood components used for transfusion or for the manufacture of pharmaceuticals derived from blood and blood components, such as clotting factors, and establishes standards for the products themselves.
Foundation for Women and Girls With Blood Disorders

Provides a wealth of information for women and girls dealing with bleeding disorders. Diagnosis, treatment, and care information all at your fingertips.
Scholarships

There are a number of educational scholarships available for people with bleeding disorders and their children, parents, partners, spouses and siblings.
Texas Health & Human Services

Resources & Services for Families & Parents of Children with Disabilities or Special Health-Care Needs in Texas | Navigate Life Texas
Microhealth

Microhealth was created by a person with severe Hemophilia A and Columbia University researcher over 15 years ago, Microhealth is the most used app in the world for people with bleeding disorders.
Get reminders, track infusions, bleeds, and physical activity. Share your progress with your care team and make better treatment decisions together. It's easy, fun, and it's free!