Making the best
possible care a reality
Ensuring the best possible health care for people with bleeding disorders is our ultimate goal. As the National Hemophilia Program Coordinating Center, we work with hemophilia treatment centers (HTCs), regional hemophilia networks, government partners, and other organizations to make sure you and your family have access to high-quality care at an HTC closest to you.
Bleeding disorders are a group of disorders that share the inability to form a proper blood clot.
While the NHPCC does not provide care directly to patients, we support the health care providers and staff at hemophilia treatment centers across the country at the local, regional, and national level. Our projects include:
- Promoting initiatives to improve the transition from pediatric to adult care
- Conducting surveys and assessments for patients and providers to better understand their needs
- Increasing access to care for underserved populations through assessment, outreach, and support
- Contributing to the knowledge base by sharing publications, tools, and resources developed by both the NHPCC and the USHTCN
- Developing quality improvement training tools and support infrastructure for HTC staff to continuously aim for better patient care and outcomes
For additional educational resources and support services for individuals and families with bleeding disorders, we recommend these organizations:
If you or someone you know needs medical care or is having a medical emergency, contact your doctor or call 9-1-1.
Contact your HTC to learn more about any research studies they may be conducting. If you need help finding an HTC near you, use this tool:
Informed consent is a document that is used by doctors, hospitals, and medical researchers that describes a treatment plan or provides information regarding a research study to a patient and their family.
HIPPA stands for the Health Information Portability and Accountability Act, a federal law that was passed in 1996 to protect your personal health information.