We are here to provide patients with support and resources. Below are some especially helpful resources for anyone learning how to navigate living with a bleeding disorder.
Hope for Hemophilia
A 501(c)(3) non-profit organization established to be a giver of hope, strength, and resources. They have been helping people living with hemophilia and their families through seasons of crisis since 2009 with financial, emotional, and practical support.
Hope was founded by friends who surrounded one family in a crisis caused by hemophilia. It is their goal to pay that friendship forward. They are working tirelessly to bring hope to a community of incredible people who face some of the most painful, scary, and lonely seasons throughout their lifetime. They believe together we can help these families win.
Hope for Hemophilia is a nationwide organization and works with patients directly to help them find resources when they need it most. They offer a patient resource program that serves hemophilia families by educating and navigating resources tailored to their needs. They provide guidance on appropriate resources such as Helping Hands, PSI, Co-pay assistance and Compassion programs, Scholarship programs, and other assistance programs while maintaining a strict standard of patient confidentiality. Hope also helps patients discover and navigate assistance with national and local programs that are not hemophilia specific but can help families in difficult seasons. They walk patients through the programs they may qualify for and provide guidance on using United Way, Medicaid, Food Stamp Programs, Social Security Disability, Habitat for Humanity, local food banks, and other local community charities.
Hope also offers a direct financial assistance program designed to help individuals and families who are in a crisis caused by hemophilia nationwide. Many of the families we help are either in the hospital, just getting out of the hospital, or have been through a prolonged season of bleeding causing them to face surgery. We define "crisis caused by hemophilia" as a crisis that is directly related to hemophilia. In other words, we ask ourselves the questions, "Is this a crisis or a personal need?" and "Was hemophilia the reason for this crisis?"
Hemophilia Federation of America, Inc. (HFA)
A patient education, services, and advocacy organization serving the rare bleeding disorders community. They focus on the bleeding disorders patient and caregiver community. 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.
HFA's Key Objectives:
- Provide LEADERSHIP in monitoring, evaluating, and responding to the actions of the government, the pharmaceutical and insurance industries, and health care providers.
- Champion the ongoing ETHICAL RESPONSIBILITY of community, government, the pharmaceutical and insurance industries, and health care providers.
- Improve AWARENESS AND EDUCATION of bleeding disorders and related medical conditions.
- PROMOTE AND ENSURE a safe blood supply and other therapies/treatments for bleeding disorders and other related medical conditions.
- Advance community and public DIALOGUE AND ACTION regarding the needs of people with bleeding disorders.
- Foster active COLLABORATION with other organizations that share similar goals.
- Deliver QUALITY PROGRAMS directly through its members.
National Hemophilia Foundation (NHF)
Dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy, and research. Established in 1948, the National Hemophilia Foundation has chapters throughout the country. Its programs and initiatives are made possible through the generosity of individuals, corporations, and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC).
NHF's broad range of programs and services include:
- Steps for Living Program, an online life stages education curriculum to assist those affected by bleeding disorders. Steps for Living consists of three modules:
- First Step for newly diagnosed ages 0-8
- Next Step, for families of children 9-15
- Step Up for young adults and their families ages 16-25
- Step Out for adults 26 and older
Modeled on NHF's current First Step program, the Steps for Living curricula contain information and resources for families and patients directly affected, as well as activities and resources for chapters and HTC staff to provide education and support to families throughout these different life stages. The Steps for Living curricula are available on the NHF website.
- National Youth Leadership Institute (NYLI) - training to help young adults enhance their leadership capabilities and become future leaders in the bleeding disorders community.
- Victory for Women - a national public awareness campaign to educate women and healthcare providers about bleeding disorders.
Wherever you are on your journey, we're here to support you. We are here to provide resources, guidance, treatment, and more to the Bleeding Disorder Community. For more information about joining the Paragon family, visit https://paragonhealthcare.com/hemo/.