Our Members - National Health Council

About NHC Membership

The NHC is a stakeholder-informed, patient-focused organization that forges consensus among diverse organizations and drives patient-centered health policy.

It is the diversity of our more than 170 members that enables us to create a collaborative environment and put forward consensus public policy solutions that keep the patient central to all we do.

The NHC delivers a wide range of member services, including meetings and conferences, action teams, affinity groups, webinars, and projects to engage with us and network with each other.

Patient organization members meet the NHC Standards of Excellence®, demonstrating the highest degree of accountability and transparency.

This summer, the National Health Council (NHC) Board of Directors approved new membership categories clarifying and reducing the categories from 5 to 3. Over the next few months, the NHC will begin transitioning to these new categories. This page will be updated in January 2024 to reflect the new categories. The following are brief descriptions of the updated member categories. Click here to see what new category your organization falls under.

Patient Organizations (previously known as Voluntary Health Agencies)
Patient Organizations (POs) are comprised of individuals who live with chronic disease(s) and/or disability(ies) and their family caregivers. They engage in an array of direct-service programs, which can include membership, support, advocacy, education, and research. Organizations in this category focus on specific patient and caregiver communities, are established as a tax-exempt nonprofit, and gain support for their mission from a wide range of the public.

Partners of Patient Organizations (previously known as Professional and Membership Associations and Nonprofit Organizations with an Interest in Health)
Partners of Patient Organization (PPOs) members may provide research, clinical, regulatory and/or policy expertise that impacts the health ecosystem in ways that are collaborative with patients and family caregivers managing chronic diseases and disabilities. Current organizations in this member category represent providers, researchers, and advocacy organizations with a broad focus on an underserved community and/or category of health consumers. Organizations in this category must be established as a tax-exempt nonprofit.

Business and Industry
Business and Industry (B&I) members share a focus on providing goods, services, and knowledge that are disseminated through the health ecosystem to aid in the treatment and management of chronic conditions and disabilities. Also included in this category are nonprofit associations that represent the business interests of certain sectors within the health ecosystem.

Patient Organizations

Alpha-1 Foundation

Patient Organizations

Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic (inherited) condition, that is passed from parents to their children through their genes. Alpha-1 may result in serious lung disease in adults and/or […]

ALS Association

Patient Organizations

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The ALS Association works to discover treatments and a […]

Alzheimer’s Association

Patient Organizations

Alzheimer’s is the most common form of dementia, a general term for memory loss and other cognitive abilities serious enough to interfere with daily life. The Alzheimer’s Association focuses on accelerating […]

American Cancer Society

Patient Organizations

Cancer occurs in the body when abnormal or old cells continue to live, while the body also creates new cells. This process can then crowd out normal cells, and create […]

American Diabetes Association

Patient Organizations

Diabetes comes in two forms. In type 1 diabetes the body does not produce insulin. In typle 2 diabetes, the body does not use insulin properly. The American Diabetes Association […]

American Foundation for Suicide Prevention

Patient Organizations

The American Foundation for Suicide Prevention (AFSP) engages in mental health initiatives to raise awareness for and support mental health. The AFSP is dedicated to saving lives and bringing hope […]

American Heart Association

Patient Organizations

Heart and blood vessel disease (also called heart disease) includes numerous problems, many of which are related to a process called atherosclerosis. The AHA us the nation’s oldest and largest […]

American Kidney Fund

Patient Organizations

Kidney disease occurs when the Kidneys are permanently damaged and can no longer clean the waste from the bloodstream. The American Kidney Fund (AKF) fights kidney disease on all fronts […]

American Liver Foundation

Patient Organizations

Liver disease involves any condition that damages the liver and prevents it from functioning well. There is an ever-increasing number of people with liver diseases such as hepatitis C, non-alcoholic […]

American Lung Association

Patient Organizations

Lungs are a part of the respiratory system, a group of organs and tissues that work together to help you breathe. Lung disease includes diseases that affect the passage of […]

Amputee Coalition

Patient Organizations

An amputation is the loss of a limb, or birth condition in which a person is born with a limb difference. Almost 2 million Americans have experienced amputation or were […]

Arthritis Foundation

Patient Organizations

Arthritis is an informal way of referring to joint pain or joint disease. There are more than 100 types of Arthritis related conditions. Common arthritis joint symptoms include swelling, pain, […]

Asthma and Allergy Foundation of America

Patient Organizations

Asthma is a chronic disease that causes airways to become inflamed which can make it difficult to breathe. Allergies are also the most common chronic disease in which the immune […]

Autoimmune Association

Patient Organizations

An autoimmune disease develops when a person’s immune system mistakenly identifies healthy cells as foreign cells and attacks them. There are over 100 known autoimmune diseases. Most of these are […]

Barth Syndrome Foundation

Patient Organizations

Barth Syndrome is a series X-linked genetic disorder, primarily affecting males. It is caused by a mutation in the tafazzin gene resulting in an inborn error in lippid metabolism. The […]

Beyond Celiac

Patient Organizations

Celiac disease is a serious and genetic autoimmune disease that is triggered by consuming protein called gluten, that is found in wheat, barley, and rye. Beyond Celiac unites with patients […]

Bone Health and Osteoporosis Foundation

Patient Organizations

Osteoporosis is a bone disease that occurs when the body loses too much bone, makes too little bone, or both. As a result, bones become weak and may break from […]

Brain Injury Association of America (BIAA)

Patient Organizations

The Brain Injury Association of America’s mission is to advance awareness, research, treatment, and education and to improve the quality of life for all people affected by brain injury.

Celiac Disease Foundation

Patient Organizations

Celiac disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. Two and one-half million Americans […]

COPD Foundation

Patient Organizations

Chronic Obstructive Pulmonary Disease (COPD) is a term used to describe chronic lung diseases including emphysema, and chronic bronchitis. This disease is also characterized by breathlessness. The COPD Foundation was […]

Crohn’s & Colitis Foundation

Patient Organizations

Crohn’s disease is an inflammatory bowel disease that causes chronic inflammation of the gastrointestinal tract. Ulcerative colitis is a chronic disease of the large intestine, in which the lining of […]

Cure SMA

Patient Organizations

Spinal Muscular Atrophy (SMA) is a progressive neurodegenerative disease that affects the motor nerve cells in the spinal cord and impacts the muscles used for activities such as breathing, eating, […]

Epilepsy Foundation

Patient Organizations

Epilepsy is a neurological condition that effects the nervous system and causes seizures. It is usually diagnosed after a person has had at least two seizures (or after one seizure […]

EveryLife Foundation for Rare Diseases

Patient Organizations

A rare disease in the United States affects fewer than 200,000 people, however more that 30 million Americans live with one or more rare diseases. Fifty percent of these rare […]

Family Heart Foundation

Patient Organizations

The mission of the Family Heart Foundation is to save generations of families from heart disease and stroke through timely identification and improved care of Familial Hypercholesterolemia (FH) and elevated […]

GBS|CIDP Foundation

Patient Organizations

Guillain-Barre’ syndrome (GBS) is an chronic inflammatory disorder of the peripheral nerves outside of the brain and spinal cord. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a rare disorder of the […]

Global Liver Institute

Patient Organizations

GLI’s mission is to improve the lives of individuals and families impacted by liver disease through promoting innovation, encouraging collaboration, and scaling optimal approaches to help eradicate liver diseases.

GO2 for Lung Cancer

Patient Organizations

Lung cancer often has no symptoms until it has spread (metastasized). This is because there are few specialized nerves (pain receptors) in the lungs. When symptoms do occur, they vary […]

Haystack Project

Patient Organizations

Haystack Project is a non-profit enabling rare and ultra-rare disease patient advocacy organizations to highlight and address systemic obstacles to patient access. Their core mission is to evolve health care […]

Hemophilia Federation of America

Patient Organizations

Hemophilia is a condition in which the ability of the blood to clot is reduced, causing the sufferer to bleed severely from even a slight injury. Hemophilia Federation of America, […]

Huntington’s Disease Society of America

Patient Organizations

Huntington’s disease (HD) is a brain disease that is passed down in families from generation to generation. It is caused by a mistake in the DNA instructions that build our […]

Hydrocephalus Association

Patient Organizations

Hydrocephalus is a chronic, neurological condition caused by an abnormal accumulation of cerebrospinal fluid (CSF) within cavities of the brain called ventricles, resulting in pressure on the brain. It affects […]

Immune Deficiency Foundation

Patient Organizations

Primary immunodeficiencies (PI) are a group of more than 400 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly. while the diseases may […]

International Fibrodysplasia Ossificans Progressiva Association (IFOPA)

Patient Organizations

Fibrodysplasia ossificans progressiva (FOP) is one of the most rare genetic conditions known to medicine. FOP causes bone to form in muscles, tendons, ligaments and other connective tissues. IFOPA provides […]

International Rett Syndrome Foundation

Patient Organizations

Rett syndrome is a rare genetic neurological disorder that affects 1 in 10,000 females (and even more rarely in males) and begins to display itself in missed milestones or regression […]

Leukemia & Lymphoma Society

Patient Organizations

The Leukemia & Lymphoma Society is at the forefront of the fight to cure cancer. We are the largest nonprofit dedicated to creating a world without blood cancers. Since 1949, […]

Lupus Foundation of America

Patient Organizations

Lupus is a chronic disease that can cause inflammation and pain in any part of the body. Lupus is an autoimmune disease, which means that your immune system — the […]

Lupus Research Alliance

Patient Organizations

The Lupus Research Alliance is going to take the very thing that infuriates us about the disease and make it the one thing that becomes its cure. Decades of pioneering […]

Mended Hearts

Patient Organizations

Mended Hearts offers hope to heart disease patients, their families, and caregivers. Mended Hearts mission is to inspire hope and improve the quality of life of heart patients and their […]

Mental Health America

Patient Organizations

Mental Health conditions are disorders that can affect mood, thinking, and behavior. Nearly 1 in 5 American adults will have a diagnosable mental health condition in any given year.

Mission MSA

Patient Organizations

Mission MSA is a dedicated community of patients, care partners, and advocates united in their commitment to overcome multiple system atrophy. With a focus on strength, determination, and urgency, Mission […]

Myasthenia Gravis Foundation of America

Patient Organizations

Myasthenia Gravis is a rare Nueromuscular disorder. The most common form of Myasthenia Gravis is a chronic autoimmune neuromuscular disorder characterized by fluctuating weakness of the voluntary muscle groups. The […]

NAMI

Patient Organizations

A mental illness is a condition that affects a person’s thinking, feeling or mood. Such conditions may affect someone’s ability to relate to others and function each day. The National […]

National Alopecia Areata Foundation

Patient Organizations

The National Alopecia Areata Foundation (NAAF) serves the community of people affected by an autoimmune skin disease called alopecia areata that results in hair loss and emotional pain. NAAF drives […]

National Bleeding Disorders Foundation

Patient Organizations

Bleeding disorders are a group of disorders that share the inability to form a proper blood clot. Symptoms include extended bleeding after injury, surgery, trauma, or menstruation. The National Bleeding […]

National Blood Clot Alliance

Patient Organizations

Blood clots can affect people of all ages, race and gender. One of the most important things you can do to prevent blood clots is to know if you are […]

National Eczema Association

Patient Organizations

Eczema encompasses a group of conditions that cause the skin to become itchy, inflamed, or have a rash-like appearance. Eczema is a common condition affecting over 31 million Americans. The […]

National Foundation for Ectodermal Dysplasias

Patient Organizations

Ectodermal Dysplasias are inherited disorders that involve defects in the hair, nails, sweat glands and teeth. When a person has at least two types of abnormal ectodermal features, the individual […]

National Foundation for Infectious Diseases (NFID)

Patient Organizations

The National Foundation for Infectious Diseases mission is to educate and engage the public, communities, and healthcare professionals about infectious diseases across the lifespan

National Kidney Foundation

Patient Organizations

Chronic kidney disease (CKD) is a condition characterized by a gradual loss of kidney function over time. National Kidney Foundation is a lifeline for all people affected by kidney disease. […]

National Multiple Sclerosis Society

Patient Organizations

Multiple Sclerosis involves an immune-mediated process in which an abnormal response of the body’s immune system is directed against the central nervous system. The National Multiple Sclerosis Society’s mission is […]

National Organization for Rare Disorders

Patient Organizations

National Organization for Rare Diseases is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

National Psoriasis Foundation

Patient Organizations

Psoriasis is an immune-mediated disease that causes inflammation in the body that may causes visible signs of inflammation such as raised plaques and scales on the skin. The National Psoriasis […]

Obesity Action Coalition

Patient Organizations

The Obesity Action Coalition (OAC) is dedicated to giving a voice to the individual affected by the disease of obesity and helping individuals along their journey toward better health through […]

Osteogenesis Imperfecta Foundation

Patient Organizations

Osteogenesis imperfecta (OI) is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. The mission of the OI Foundation is to improve the […]

Parent Project Muscular Dystrophy

Patient Organizations

Duchenne Muscular Dystrophy is a genetic disorder characterized by the progressive loss of muscle. It is a multi-systemic condition, affecting many parts of the body, which results in deterioration of […]

Parkinson’s Foundation

Patient Organizations

Parkinson’s disease (PD) is a neurodegenerative disorder that affects predominately dopamine-producing (“dopaminergic”) neurons in a specific area of the brain called substantia nigra. Symptoms generally develop slowly over years. The progression […]

Patient Empowerment Network

Patient Organizations

The Patient Empowerment Network (PEN) offers trusted information to empower anyone impacted by cancer, through health equity, health literacy and shared decision-making. PEN’s evidence-based programs provide resources for patients living […]

Prevent Blindness

Patient Organizations

Prevent Blindness mission is to prevent blindness and preserve sight. Prevent Blindness focuses on a wide array of eye conditions and diseases that may contribute to blindness.

Pulmonary Fibrosis Foundation

Patient Organizations

Pulmonary Fibrosis is scarring in the lungs that may lead to low oxygen levels. Pulmonary fibrosis is a family of more than 200 different lung diseases. The Pulmonary Fibrosis Foundation […]

RESOLVE: The National Infertility Association

Patient Organizations

Infertility is characterized by the failure to establish a clinical pregnancy after 12 months of regular, unprotected sexual intercourse or due to an impairment of a person’s capacity to reproduce […]

Sjögren’s Foundation

Patient Organizations

Sjörgren’s is a systemic autoimmune disease that affects the entire body. The Sjörgen’s Foundation aims to create a community where patients, health care professionals, and researchers come together to conquer […]

Spina Bifida Association

Patient Organizations

Spina Bifida is the most common permanently disabling birth defect that is associated with life. Approximately 166,000 individuals in the United States have Spina Bifida.

Susan G. Komen

Patient Organizations

Susan G. Komen’s mission is saving lives by meeting the most critical needs in our communities and investing in breakthrough research to prevent and cure breast cancer.

The LAM Foundation

Patient Organizations

Lymphangioleiomyomatosis (LAM) is a rare and progressive lung disease that primarily affects women and has no known cure. The LAM Foundation serves the scientific, medical, and patient communities by offering […]

The Marfan Foundation

Patient Organizations

Marfan syndrome is a genetic disorder that affects the body’s connective tissue. Connective tissue holds all the body’s cells, organs and tissue together. The Marfan Foundation’s mission is to save […]

The Myositis Association

Patient Organizations

Myositis refers to a general inflammation or swelling of the muscle. The mission of The Myositis Association is to improve the lives of persons affected by myositis, fund innovative research, […]

The Solve ME/CFS Initiative (Solve M.E.)

Patient Organizations

The Solve ME/CFS Initiative (Solve M.E.) is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid […]

The Trevor Project

Patient Organizations

The Trevor Project is a suicide prevention and crisis intervention organization for LGBTQ (lesbian, gay, bisexual, transgender, queer, and questioning) young people. The organization works to save young lives by […]

Tourette Association of America

Patient Organizations

Tourette Syndrome is a type of Tic disorder characterized by 2 motor tics and 1 vocal tics that have occurred for more than 1 year. Tourette Association of America (formerly […]

Vasculitis Foundation

Patient Organizations

Building upon the collective strength of the vasculitis community, the Foundation supports, inspires and empowers individuals with vasculitis and their families through a wide range of education, research, clinical, and […]

VHL Alliance

Patient Organizations

The VHL Alliance is dedicated to research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by von Hippel-Lindau disease. VHL disease is a […]

WomenHeart: The National Coalition for Women with Heart Disease

Patient Organizations

WomenHeart’s mission is to improve the health and quality of life of women living with or at risk of heart disease, and to advocate for their benefit.