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Government Resources

Where Can I go for Help? was created by the FDA to help patients, industry representatives and others find the resources they need within FDA and from other places.

The Centers for Disease Control and Prevention (CDC) is one of the major operating components of the Department of Health and Human Services. The mission of the CDC is, “Collaborating to create the expertise, information, and tools that people and communities need to protect their health – through health promotion, prevention of disease, injury and disability, and preparedness for new health threats.”

The U.S. Food and Drug Administration (FDA) is an agency within the Department of Health and Human Services and is responsible for protecting the public health by assuring the safety, efficacy, and security of human and veterinary drugs, biological products, medical devices, our nation’s food supply, cosmetics, and products that emit radiation, and by regulating the manufacture, marketing, and distribution of tobacco products. The FDA is also responsible for advancing the public health by helping to speed innovations that make medicines and foods more effective, safer, and more affordable; and helping the public get the accurate, science-based information they need to use medicines and foods, and to reduce tobacco use to improve health.

The National Institutes of Health (NIH) seeks fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce the burdens of illness and disability.

The Rare Diseases Clinical Research Network (RDCRN) is made up of 19 distinctive consortia that are working in concert to improve availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community. The RDCRN also aims to provide up-to-date information for patients and to assist in connecting patients with advocacy groups, expert doctors, and clinical research opportunities.

The National Cancer Institute (NCI) is part of the National Institutes of Health (NIH), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.

The National Cancer Institute recently launched the International Clinical Trials Portal on Cancer.gov. This section of the NCI website provides a central location for online resources that will help investigators outside the United States navigate the legal and regulatory issues that come with collaborating on clinical trials with U.S.-based research groups.

The National Library of Medicine (NLM), on the campus of the National Institutes of Health in Bethesda, Maryland, is the world's largest medical library. The Library collects materials and provides information and research services in all areas of biomedicine and health care.

Clinical Trials.Gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details.

The Office of Rare Diseases Research (ORDR) Web site aims to answer questions about rare diseases and the activities of the ORDR for patients, their families, healthcare providers, researchers, educators, students, and anyone with concern for and interest in rare diseases. The site provides information about ORDR-sponsored biomedical research, scientific conferences, and rare and genetic diseases. It also serves as a portal to information on major topics of interest to the rare diseases community.

The Rare Diseases Program in the Center for Drug Evaluation and Research (CDER)  facilitates and supports the research, development, regulation and approval of drug and biologic products for the treatment of rare disorders.

The Center for Biologics Evaluation and Research (CBER) is the Center within FDA that regulates biological products for human use under applicable federal laws. CBER protects and advances the public health by ensuring that biological products are safe and effective and available to those who need them. CBER also provides the public with information to promote the safe and appropriate use of biological products.

The Patient Network is part of the FDA. They work to bring the unique perspective of patients, family members, caregivers, and patient advocates to the decision-making processes of the FDA. Through the Patient Network, you can learn more about FDA and how it works, where you can provide input in decisions about new or current medical products, and talk with FDA experts about issues and concerns that are important to you.

The FDA Office of Orphan Products Development (OOPD) is dedicated to promoting the development of products that demonstrate promise for the diagnosis and/or treatment of rare diseases or conditions since 1982. OOPD interacts with the medical and research communities, professional organizations, academia, and the pharmaceutical industry, as well as rare disease groups.

The Health Resources and Services Administration (HRSA), an agency of the U.S. Department of Health and Human Services, is the primary Federal agency for improving access to health care services for people who are uninsured, isolated or medically vulnerable.

The Genetic Testing Registry (GTR) provides a central location for voluntary submission of genetic test information by providers. The scope includes the test's purpose, methodology, validity, evidence of the test's usefulness, and laboratory contacts and credentials.

MedlinePlus is the National Institutes of Health's Web site for patients and their families and friends. Produced by the National Library of Medicine, it brings you information about diseases, conditions, and wellness issues in language you can understand. MedlinePlus offers reliable, up-to-date health information, anytime, anywhere, for free.

A Revolution in Progress Human Genetics and Medical Research is an exhibit produced by many groups within NIH. Cracking the genetic code allowed us to study diseases at the molecular level, which is increasing our knowledge of potential preventions and treatments for diseases. Indeed, genetics has become central to the science of medicine. This exhibit asks many questions: How do genes cause disease? Can gene therapy work? How do we manipulate genes and should we?

Social Security Administration runs disability programs including The Social Security and Supplemental Security Income disability programs.

Office of Disability Employment Policy is part of the United States Department of Labor and envisions a world in which people with disabilities have unlimited employment opportunities.

The GeneTests Web site is a publicly funded medical genetics information resource developed for physicians, other healthcare providers, and researchers. By providing current, authoritative information on genetic testing and its use in diagnosis, management, and genetic counseling, GeneTests promotes the appropriate use of genetic services in patient care and personal decision making.

MyCare is an initiative to educate Americans about new programs, benefits, and rights under the health care law.

 
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