Whether delving into healthcare policy or grassroots organizing, comprehending commonly used terms empowers individuals to navigate complex systems and communicate ideas effectively. By grasping these terms, you can participate more confidently in advocacy efforts and contribute meaningfully to discussions on vital issues. 
We want to help you get more familiar with and learn these terms and agencies, so we have created a comprehensive glossary of terms listed below on this page. This glossary serves as a reference guide for understanding the key terminology used in health, political, and advocacy contexts. It is designed to be easily accessible and user-friendly, ensuring that you can quickly find definitions and explanations as you encounter these terms in your advocacy work.
In addition to the on-page glossary, we have developed a free “Glossary Of Common Health, Political & Advocacy Terms” download. You can download and print this resource to use as a reference or learning tool that can be conveniently carried with you. Having a printed glossary can be particularly useful during meetings, discussions, or while conducting research, allowing you to have the information at your fingertips.
Understanding the nuances of specific words and concepts not only enhances your ability to advocate for change, but also fosters a deeper engagement with the issues at hand, ultimately driving more impactful and informed action.
We hope these resources help you on your advocacy journey, providing you with the knowledge and confidence needed to make a difference. 
Whether delving into healthcare policy or grassroots organizing, comprehending commonly used terms empowers individuals to navigate complex systems and communicate ideas effectively. By grasping these terms, you can participate more confidently in advocacy efforts and contribute meaningfully to discussions on vital issues. 
We want to help you get more familiar with and learn these terms and agencies, so we have created a comprehensive glossary of terms listed below on this page. This glossary serves as a reference guide for understanding the key terminology used in health, political, and advocacy contexts. It is designed to be easily accessible and user-friendly, ensuring that you can quickly find definitions and explanations as you encounter these terms in your advocacy work.
In addition to the on-page glossary, we have developed a free “Glossary Of Common Health, Political & Advocacy Terms” download. You can download and print this resource to use as a reference or learning tool that can be conveniently carried with you. Having a printed glossary can be particularly useful during meetings, discussions, or while conducting research, allowing you to have the information at your fingertips.
Understanding the nuances of specific words and concepts not only enhances your ability to advocate for change, but also fosters a deeper engagement with the issues at hand, ultimately driving more impactful and informed action.
We hope these resources help you on your advocacy journey, providing you with the knowledge and confidence needed to make a difference. 
Act

A bill that has passed both houses of Congress and has been enacted into law.

Adoption

Formally approve of; usually in reference to a change or amendment.

Advocacy

The act of supporting a cause or proposal, often involving efforts to influence public opinion or decision-making.

Advocacy Campaign

A coordinated series of actions and activities aimed at promoting a specific cause, influencing policy change, or raising awareness about an issue.

Advocacy Organization

A nonprofit or advocacy group that works to promote specific causes or policies.

Advocacy Network

A group of organizations or individuals working together to advance shared policy goals or address common concerns.

Amendment

A formal change (or proposed change) made to a piece of legislation.

Amendment Process

The procedure for proposing and ratifying changes to a constitution or legal document.

Appeal

Asking a higher court to change or reverse the decision of a lower court.

Appropriation

The allocation of funds for a specific purpose within government. Allows for funds to be spent but is not an actual expenditure.

Bicameral Bill

A bill that has been introduced in both the House and Senate.

Bipartisan Bill

A bill that has at least one cosponsor from both parties.

Bill Cosponsor

A Representative or Senator who formally signs on to support a bill. Only the first-named Member is the sponsor, all others are cosponsors, even those whose names appeared on the measure at the time it was submitted.

Bill Sponsor

A Representative or Senator who introduces a bill.

Cabinet

A body consisting of the Vice President of the United States and the heads of the executive branch’s federal executive departments.

Campaign Finance

The financing of political campaigns, including contributions from individuals, corporations, and interest groups, as well as regulations governing campaign spending.

Campaign Strategy

A plan of action outlining the goals, tactics, and resources needed to achieve desired outcomes in an advocacy or awareness-raising campaign.

Caucus

An informal meeting of members of a body of government (typically belonging to the same political party and/or another common interest such as the Rare Disease Caucus).

Chair

The member of the majority party on a committee or subcommittee who has formal responsibility over the panel’s agenda and resources, presides at its meetings, and can, in some circumstances, act on the committee’s behalf.

Chronic Illness

A long-lasting medical condition that typically cannot be cured but can be managed with ongoing treatment and care.

Civil Liberties

Fundamental rights and freedoms that protect individuals from government intrusion or oppression.

Civil Rights

The rights of individuals to receive equal treatment and protection under the law, regardless of their race, gender, religion, or other characteristics.

Coalition

An alliance or partnership formed by various groups or organizations working towards a common goal or objective.

Committee

A panel with members from the House or Senate tasked with conducting hearings, examining and developing legislation, and conducting oversight.

Community Engagement

The process of involving community members in decision-making, problem-solving, or planning efforts that affect their lives.

Community Organizing

The process of mobilizing and empowering community members to collectively address common concerns, build relationships, and effect social change.

Complex Disease

A medical condition characterized by a combination of various symptoms and factors, often requiring specialized treatment and management.

Constituent

Citizens within a district of a legislator; the voters that elect a representative. “Died in committee” – A bill that was considered and rejected by a committee; not returned to the house for action.

Constituency

The group of people represented by a particular elected official, such as constituents within a legislative district.

County Board of Directors

The governing body responsible for overseeing the operations and policies of a county government.

Direct Action

Political activities, such as protests, demonstrations, or strikes, that are intended to bring about immediate change or raise awareness of an issue.

Discrimination

The unjust or prejudicial treatment of different categories of people, especially on the grounds of race, age, sex, or disability.

Earmark

A provision inserted into legislation that directs funds to a specific project, program, or organization, often at the request of a legislator.

Enacted

When a bill is passed by both chambers and signed into law by the President.

Equality

The state of being equal, especially in status, rights, and opportunities.

Equity

The quality of being fair and impartial; fairness and justice in the distribution of resources and opportunities.

Filibuster

A prolonged discussion of a piece of legislation that delays or prevents legislative action.

Good Governance

The principles and practices that promote transparency, accountability, responsiveness, and effectiveness in government.

Governor

The elected head of a state government, responsible for implementing state laws and policies, overseeing the state budget, and representing the state's interests.

Grassroots Advocacy

Political activism or organizing efforts that mobilize individuals at the local level to influence policy decisions or promote social change.

Hearing

A formal meeting of a congressional committee (or subcommittee) to gather information from witnesses for use in its activities.

Inclusive Policy

Policies and practices that consider and accommodate the needs and interests of diverse populations, including marginalized or underrepresented groups.

Interest Group

An organization or association that seeks to influence public policy on behalf of its members or supporters.

Issue Brief

A concise document that provides background information, analysis, and recommendations on a specific policy or social issue.

Joint Session

Meeting of both the House and the Senate in one chamber.

Legislation

The process of making or enacting laws; the laws created through this process.

Legislative Agenda

The set of priorities and issues that a legislator or legislative body intends to address during a particular session or term.

Legislative Branch

The branch of government responsible for making laws, comprising the House of Representatives and the Senate.

Legislator

An elected official of a legislative body.

Legislature

The branch of government responsible for enacting laws.

Lobbying Disclosure

The requirement for individuals or organizations to register and report their lobbying activities, including contacts with government officials and expenditures on lobbying efforts.

Lobbyist

A person who attempts to influence legislation on behalf of a specific interest group.

Majority Party

The political party having electoral strength sufficient to permit it to win control of a government.

Majority Speaker

The leader of the majority party in a legislative chamber, responsible for managing the party's legislative agenda and representing the chamber to the public.

Markup

Meeting by a committee or subcommittee during which committee members offer, debate, and vote on amendments to a bill or other measure.

Mayor

The elected head of a municipal government, typically responsible for overseeing city operations and representing the city's interests.

Medicaid

A federal system of health insurance for those requiring financial assistance.

Medicare

A federal system of health insurance for people over 65 years of age or for certain younger people with disabilities.

Minority Party

A political party whose electoral strength is so small as to prevent its gaining control of a government except in rare and exceptional circumstances.

Minority Speaker

The leader of the minority party in a legislative chamber, responsible for representing the minority's interests and viewpoints in the legislative process.

Motion

A proposal asking for the Senate or House to take an action.

Nonpartisan

Not associated with a single political party or caucus.

Partisan

Being associated with a single political party or caucus.

Passed

When a bill is approved in one chamber by a majority vote (most legislation requires a 60-vote majority in the Senate).

Petition

A formal written request submitted by anyone other than the legislature (individuals, boards, commissions, cities, etc.).

Policy Advocacy

Efforts to influence government policy decisions through education, persuasion, and mobilization of public support.

Policy Analysis

The systematic examination and evaluation of public policies to assess their effectiveness, implications, and potential alternatives.

Policy Brief

A concise document that summarizes key information and recommendations related to a specific policy issue, often used to inform decision-makers.

Public Affairs

The management of communication and relationships between organizations, government officials, and the public, often involving issues of public policy and government affairs.

Public Forum

An open discussion or debate on a public issue, typically organized to engage community members and gather diverse perspectives.

Public Opinion

The collective views, attitudes, and beliefs of the general population on political, social, or economic issues.

Quorum

The minimum number of members of the legislature necessary to conduct business.

Ranking Member

The most senior (though not necessarily the longest-serving) member of the minority party on a committee or subcommittee. The ranking member typically oversees minority committee staff and may coordinate involvement of the minority party members in committee activities.

Rare Disease

A medical condition that affects a small percentage of the population, often characterized by complex symptoms and requiring specialized treatment and care.

Recess

The temporary break of a daily session. Can refer to breaks within the same day, overnight, or longer breaks (such as over holidays).

Repeal

To revoke or annul a legislative action.

Resolution

An official communication of an intent by a legislature or a chamber.

Senator

Senators are elected by voters to represent them in a state or federal senate. Each state in the US elects two senators who serve six-year terms in Washington, DC, where they pass laws and vote on policies.

Session

The period of time that the legislature meets and carries out its regular business. The constitution. Regular session: the annual or biennial meeting of the legislature.

Special Session

A special session is a period when the body convenes outside of the normal legislative session. This most frequently occurs in order to complete unfinished tasks for the year, such as outlining the government's budget for the next fiscal year, biennium, or other period.

Speaker of the House

The presiding officer of the United States House of Representatives, responsible for managing the legislative process, maintaining order, and representing the House to the public.

Stakeholder Engagement

The process of involving individuals, groups, or organizations that are affected by or have a vested interest in a particular issue or decision in the decision-making process.

Transparency

The openness and accessibility of government processes, information, and decision-making to the public.

Veto

The power of a president or governor to reject a bill proposed by the legislature, preventing it from becoming law.

Voting Rights

The legal rights of citizens to participate in elections and have their voices heard in the political process, including the right to vote and the right to access polling places.

BRANCHES OF U.S. FEDERAL GOVERNMENT

LEGISLATIVE BRANCH

(makes laws)

  • Congress
    • Senate
      • 100 Senators
      • 2 Senators Per State
      • Senator Terms Last 6 Years
      • No Term Limits
    • House Of Representatives
      • 435 Representatives
      • Amount Of Representatives Per State Dependent On State Population
      • Term Is For 2 Years
      • No Term Limits
    • Other Agencies Such As Library Of Congress, U.S. Capitol Police, The Congressional Budget,

EXECUTIVE BRANCH

(carries out the laws)

  • President
    • Vice President
    • Cabinet
      • 23 Members In The Cabinet
      • Cabinet Members Are Nominated By The President And Approved By The Senate With At Least 51 Votes
    • Executive Office Of The President
      • National Security Council
      • Office Of The National Drug Control Policy
    • Executive Departments
      • Department Of Health And Human Services

JUDICIAL BRANCH

(interprets laws)

  • Supreme Court
    • 9 Supreme Court Judges
    • Judges Are Nominated By The President And Approved By The Senate With At Least 51 Votes
  • Other Federal Courts  

HEALTH-RELATED FEDERAL GOVERNMENT AGENCIES

Agency for Healthcare Research and Quality (AHRQ): This agency is dedicated to funding and conducting research to improve healthcare quality. AHRQ also focuses on spreading this evidence and applying it in clinical settings.
Centers for Disease Control and Prevention (CDC): The CDC is charged with protecting public health from domestic and international threats. It monitors diseases, collects data, and maintains extensive databases on disease prevalence and regional statistics.
Centers for Medicare and Medicaid Services (CMS): CMS administers programs like Medicare, Medicaid, and the Children’s Health Insurance Program (CHIP), which provide healthcare coverage and reimbursement.
Medicaid: A federal insurance program designed to provide healthcare to individuals who need financial assistance.
Medicare: A federal health insurance program for people aged 65 and older, as well as younger individuals with certain disabilities.
Department of Defense (CDMRP): Hosts the Congressionally Directed Medical Research Programs, created in 1992 to support innovative biomedical research based on stakeholder needs, including those of the American public, military, and Congress.
Department of Education: Manages federal education programs and initiatives across the United States.
Social Security Administration (SSA): An independent federal agency that manages Social Security, providing retirement, disability, and survivor benefits.
Department of Health and Human Services (HHS): This cabinet-level department aims to protect the health of Americans and provide essential human services. 
Food and Drug Administration (FDA): Protects public health by ensuring the safety and effectiveness of human and veterinary drugs, biological products, medical devices, and food, as well as the safety of cosmetics and products that emit radiation.
Center for Drug Evaluation and Research (CDER): Part of the FDA, CDER regulates both over-the-counter and prescription drugs, including biologics and generics.
Center for Biologics Evaluation and Research (CBER): A division within the FDA that oversees biological products for human use.
Center for Devices and Radiological Health (CDRH): Ensures the safety and effectiveness of medical devices and oversees their manufacturing and performance.
Health Resources and Services Administration (HRSA): The lead federal agency for improving healthcare access for people who are uninsured, isolated, or medically vulnerable. HRSA also manages several newborn screening programs.
National Institutes of Health (NIH): The premier medical research agency in the U.S., dedicated to making discoveries that improve health and save lives. NIH consists of 27 institutes and centers.
Indian Health Service (IHS): Provides healthcare services to American Indians and Alaska Natives, aiming to raise their health status to the highest possible level.
Substance Abuse and Mental Health Services Administration (SAMHSA): Leads public health efforts to advance the behavioral health of the nation, focusing on reducing the impact of substance abuse and mental illness on communities.
Agency for Toxic Substances and Disease Registry (ATSDR): Works to prevent exposure to hazardous substances from waste sites and emergency chemical releases, mitigating human health risks associated with toxic substances.
National Institute for Occupational Safety and Health (NIOSH): A division of the CDC, NIOSH conducts research and provides recommendations to prevent work-related injuries and illnesses.
Office of the National Coordinator for Health Information Technology (ONC): Promotes the adoption and meaningful use of health information technology to improve healthcare quality, safety, and efficiency

COMMONLY REFERENCED NON-GOVERNMENT HEALTH AGENCIES

Global Healthy Living Foundation (GHLF): A non-profit organization advocating for patients with chronic illnesses to improve their quality of life through research, education, support, and advocacy.
Institute for Clinical and Economic Review (ICER): ICER is an independent, non-partisan organization focused on creating frameworks to evaluate the value of new health technologies based on evidence. Their goal is to provide clear and objective assessments to inform healthcare decisions.
National Alliance on Mental Illness (NAMI): The nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness through advocacy, education, support, and public awareness.
National Committee for Quality Assurance (NCQA): An organization that works to improve healthcare quality through the administration of evidence-based standards, measures, programs, and accreditation.
Patient-Centered Outcomes Research Institute (PCORI): PCORI is a non-profit organization established by the government to support research that improves health outcomes. By funding studies, PCORI aims to provide patients and caregivers with the data and information needed to make well-informed healthcare choices. The institute’s funding is secured through 2029.
The Joint Commission: An independent, non-profit organization that accredits and certifies nearly 21,000 healthcare organizations and programs in the United States, aiming to improve healthcare quality and patient safety

FREQUENTLY REFERENCED HEALTH-RELATED LEGISLATION

21st Century Cures Act: Enacted in December 2016, this law provides $6.3 billion in funding mainly for the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). The Act aims to accelerate the development and availability of medical innovations by improving the processes for approving new medical products and devices.
Accelerated Approval: Initiated by the FDA in 1992, this program speeds up the approval process for drugs that treat serious conditions with unmet medical needs. Drugs can be approved based on surrogate endpoints that are reasonably likely to predict clinical benefits, allowing for faster access to new treatments.
Affordable Care Act (ACA): Signed into law in March 2010, the ACA, also known as Obamacare, seeks to expand health insurance coverage to millions of uninsured Americans. It does this by providing subsidies to make insurance affordable, expanding Medicaid, and implementing various reforms to improve healthcare quality and reduce costs.
Creating Hope Act: This law provides an incentive for the development of drugs for children with rare diseases. Companies that develop such drugs can earn priority review vouchers, which can expedite the FDA review process for other drugs.
Federal Advisory Committee Act (FACA): Established in 1972, FACA governs the operation of federal advisory committees, emphasizing open meetings, public involvement, and transparency in the advisory process.
Food and Drug Administration Safety and Innovation Act (FDASIA): Signed into law in 2012, FDASIA enhances the FDA’s ability to protect public health. It includes provisions for collecting user fees, promoting innovation, increasing stakeholder involvement, and improving the safety of the drug supply chain.
Guidance Document: These are non-binding recommendations issued by agencies like the FDA to help the public understand how to comply with laws and regulations. They clarify objectives and interpretations of complex or ambiguous requirements.
ICD Code: The International Classification of Diseases (ICD) system is used globally to code and classify health conditions and diseases in medical records and for statistical purposes.
Lobbying Disclosure Act (LDA): Enacted in 1995, this law increases transparency in federal lobbying activities. It requires lobbyists to register and report their activities and applies to contacts with both legislative and executive branches, but not state or local lobbying.
Medical Device User Fee Amendments (MDUFA): Established in 2002, these amendments require medical device companies to pay fees to the FDA for product reviews. The funds are used to streamline regulatory processes and expedite the market availability of safe and effective medical devices.
Newborn Screening Saves Lives Act: Originally passed in 2008 and reauthorized in 2014, this Act establishes national guidelines for newborn screening and supports comprehensive screening programs in all states.
Orphan Drug Act (ODA): Passed in 1983, this law encourages the development of drugs for rare diseases by providing various incentives, including market exclusivity, tax credits, and grant funding.
Patient Experience Data: Defined in the 21st Century Cures Act, this refers to data collected to capture patients’ experiences, needs, and priorities regarding their conditions, which helps inform the development and evaluation of medical products.
Patient-Focused Drug Development: This approach ensures that patients’ perspectives are considered throughout the drug development process, from initial research to final evaluation, enhancing the relevance and impact of new medical products.
Prescription Drug User Fees Amendments (PDUFA): Created in 1992 and reauthorized every five years, PDUFA allows the FDA to collect fees from pharmaceutical companies to fund the drug approval process. PDUFA VI, passed in 2017, includes provisions for incorporating patient experience data, using real-world evidence, and improving biomarker use in drug development.
Priority Review Vouchers: These vouchers, earned by developing treatments for rare pediatric diseases, allow pharmaceutical companies to expedite the FDA review process for other drugs, incentivizing the development of less commercially viable treatments.
Regulation: Federal regulations are detailed rules issued by government agencies to implement laws passed by Congress. These rules have the force of law and provide specific directives to ensure compliance with legislative mandates.
Rare Diseases Act: This legislation aims to enhance research, education, awareness, and treatment options for rare diseases.
Genetic Information Nondiscrimination Act (GINA): GINA prohibits discrimination by health insurers and employers based on genetic information.
Medicare Access and CHIP Reauthorization Act (MACRA): MACRA changed the way Medicare pays healthcare providers and incentivizes quality care over volume.
Health Insurance Portability and Accountability Act (HIPAA): HIPAA protects patients’ privacy and sets standards for the security of electronic health information.
Mental Health Parity and Addiction Equity Act (MHPAEA): MHPAEA requires health insurance plans to provide coverage for mental health and substance use disorder