People with bleeding disorders and their family members are the center of the work of the National Hemophilia Foundation. We support research that has a measurable impact on people’s lives; deliver education that helps people with bleeding disorders and their family members thrive; and advocate for policies at the state and local level that protects access to healthcare.
How Does NHF Support Research?
A world without inheritable bleeding disorders begins with research. NHF has invested more than $20 million into research into better treatments and cures for bleeding disorders. Our current research program supports basic science research, innovative investigators, and NIH bridge grants, among others. Through our fellowships, we support the hematologists, nurses, social workers and physical therapists who provide care for people with bleeding disorders and encourage young doctors to joint their ranks.
NHF is currently developing a national research agenda in partnership with the bleeding disorders community, including patients and families, healthcare providers, our local chapters and other bleeding disorders advocacy groups, and pharmaceutical companies to ensure that the voice of the people who are most affected by research – the patients and families – remain at the center of scientific progress.
How Does NHF Support Healthcare Providers?
For people with bleeding disorders to receive optimal care, their healthcare providers need to be knowledgeable about the latest treatments and trends in bleeding disorders care. NHF’s Medical and Scientific Advisory Council (MASAC) has been issuing recommendations and advisories on treatment, research and other general health concerns for the bleeding disorders community since 1954.
At NHF’s Bleeding Disorders Conference, we provide education to hematologists, nurses, social workers and physical therapists on the latest developments in treatment and care. Through our clinical fellowship program, we encourage researchers within the hemophilia treatment center network to investigate areas that can improve care. Our education extends beyond bleeding disorders specialists – through partnerships with Medscape, we provide bleeding disorders education to pediatricians, OB-GYNs, and other providers so they can recognize the symptoms of a bleeding disorder and help their patients get the care they need.
Where Can I Get Information and Education About My Bleeding Disorder?
NHF believes in giving people with bleeding disorders the tools they need to manage their bleeding disorder, make informed decisions around their care, and live healthy, productive lives. NHF’s Steps for Living website provides educational information for all life stages. We created vetted, unbiased educational content on a variety of topics – from gene therapy to mental health – to help affected individuals and their family members thrive. Our educational content is available through webinars, chapter events, and at NHF’s Bleeding Disorders Conference.
For specific questions about your bleeding disorder, you can contact HANDI, NHF’s Information Resource Center. Our information specialists will be happy to assist you with questions about bleeding disorders
NHF is dedicated to serving all people with a bleeding disorder in the US. We provide online education for people with rare factor disorders, and a conference for people with hemophilia and inhibitors. We work with the Centers for Disease Control and Prevention (CDC) to lower the number of undiagnosed women with bleeding disorders through our outreach campaign, Better You Know. NHF’s Guías Culturales are Latinx members of the bleeding disorders community who assist other Latinx families in accessing services and healthcare. NHF also invests in the next generation of leaders through its National Youth Leadership Institute (NYLI).
How Does NHF Protect Access to Healthcare?
NHF is committed to ensuring that people with bleeding disorders have timely access to quality medical care, therapies and services, regardless of financial circumstances or where they live. In our history, we have advocated for patient protections including equal access to health insurance for people with pre-existing conditions, the elimination of lifetime and annual caps, and access to FDA-approved therapies. We have proudly fought to protect the Affordable Care Act, as many of the essential health benefits in the act directly affect our community members. Each year, NHF hosts the largest bleeding disorders advocacy event in the US, Washington Days, in Washington, DC.
On the state level, we work with our chapters to train advocates, identify issues regarding access to care, and train state-based advocacy coalitions (SBACs) to work together to advocate with state legislatures.
Where Can I Connect with Families Near Me?
NHF supports a network of 50 local bleeding disorders organizations. These chapters, 42 of which are independently operated, provide a variety of education and services to people with bleeding disorders. To be an NHF chapter, the organization must meet a number of standards in education, communications, advocacy and services. In addition, NHF chapter staff receive trainings on best practices, fundraising, donor and volunteer management, board development, and communications. Our chapter directory can help you find a chapter near you.
How Can I Get Involved with NHF?
We are grateful to the many talented people who volunteer to help our organization by serving on our provider working groups, board of directors, MASAC, and community volunteers. Learn more about how you can make a difference in the bleeding disorders community by visiting our Volunteer Opportunities section.