National Nonprofit Disease Organizations

Accelerate Brain Cancer Cure (ABC2)

Accelerate Brain Cancer Cure (ABC2) believes that a nimble, focused and aggressive entrepreneurial model will increase the number of therapies discovered and then enable those therapies to be more rapidly driven into the clinic. We provide researchers with the pivotal support they need to make critical breakthroughs. We fund novel translational research aimed at finding the fastest possible route to a cure.

American Cancer Society

The American Cancer Society is the nationwide, community-based, voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service.

American Diabetes Association

The American Diabetes Association is leading the fight against the deadly consequences of diabetes and fighting for those affected by diabetes. The Association funds research to prevent, cure and manage diabetes; delivers services to hundreds of communities; provides objective and credible information; and gives voice to those denied their rights because of diabetes. Founded in 1940, our mission is to prevent and cure diabetes and to improve the lives of all people affected by diabetes. For more information please call the American Diabetes Association at 1-800-DIABETES (1-800-342-2383) or visit www.diabetes.org.

American Heart Association

The American Heart Association is a national voluntary health agency whose mission is: "Building healthier lives, free of cardiovascular diseases and stroke." The association's impact goal is to reduce coronary heart disease, stroke and risk by 25 percent by 2010.

American Kidney Fund

The mission of the American Kidney Fund is to fight kidney disease through direct financial support to patients in need; health education; and prevention efforts.The American Kidney Fund was founded in 1971 to save the life of one person who needed help paying for dialysis. Thirty-seven years later, AKF has become the leading source of direct, treatment-related financial assistance to people in the United States who are living with chronic kidney disease.

American Liver Foundation

The American Liver Foundation was created in 1976 by the American Association for the Study of Liver Disease (AASLD). This organization of scientists and healthcare professionals was concerned with the rising incidence of liver disease and the lack of awareness among both the general public and the medical community. The mission, the programs and the services provided by ALF complement the great work of AASLD. The American Liver Foundation mission is to facilitate, advocate and promote education, support and research for the prevention, treatment and cure of liver disease.

American Lung Association

The mission of the American Lung Association is to save lives by improving lung health and preventing lung disease. Now in its second century, the American Lung Association is the leading organization working to save lives, improve lung health and prevent lung disease. With your generous support, the American Lung Association is "Fighting for Air" through research, education and advocacy. For more information about the American Lung Association, a Charity Navigator Four Star Charity and holder of the Better Business Bureau Wise Giving Guide Seal, or to support the work it does, call 1-800-LUNG-USA (1-800-586-4872)

Autism Speaks

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders. We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals. Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

C3: Colorectal Cancer Coalition

C3: Colorectal Cancer Coalition is a nonprofit, nonpartisan advocacy organization that fights colorectal cancer through research, empowerment and access. C3 pushes for research to improve screening, diagnosis, and treatment of colorectal cancer; for policy decisions that make the most effective colorectal cancer prevention and treatment available to all; and for increased awareness that colorectal cancer is preventable, treatable, and beatable.

Crohn's and Colitis Foundation of America

The Crohn's and Colitis Foundation of America is a non-profit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis. It was founded in 1967 by Irwin M. and Suzanne Rosenthal, William D. and Shelby Modell, and Henry D. Janowitz, M.D. Four decades ago, the Crohn's & Colitis Foundation created the field of Crohn's disease and ulcerative colitis research. Today, the Foundation funds cutting-edge studies at major medical institutions, nurtures investigators at the early stages of their careers, and finances underdeveloped areas of research. Educational workshops and symposia, together with our scientific journal, Inflammatory Bowel Diseases, enable medical professionals to keep pace with this rapidly growing field. No wonder the National Institutes of Health has commended the Foundation for "uniting the research community and strengthening IBD research."

Cystic Fibrosis Foundation

The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. The Foundation is the leading organization in the United States devoted to cystic fibrosis. It funds and accredits more than 115 CF care centers, 95 adult care programs and 50 affiliate programs, and has 80 chapters and branch offices nationwide.

Depression and Bipolar Support Alliance (DBSA)

The Depression and Bipolar Support Alliance (DBSA) is the leading patient-directed national organization focusing on the most prevalent mental illnesses. The organization fosters an environment of understanding about the impact and management of these life-threatening illnesses by providing up-to-date, scientifically based tools and information written in language the general public can understand. DBSA supports research to promote more timely diagnosis, develop more effective and tolerable treatments, and discover a cure. The organization works to ensure that people living with mood disorders are treated equitably. DBSA was founded in 1985. DBSA is a not-for-profit 501(c)(3) organization that answers more than 3,000 calls per month on our toll-free information and referral line and receives over 23 million hits per year on our combined websites. Each month we distribute nearly 20,000 educational materials free of charge to anyone requesting information about mood disorders. DBSA reaches nearly five million people through our educational materials and programs, exhibit materials, and media activities.

Down Syndrome Research & Treatment Foundation

The mission of the Down Syndrome Research & Treatment Foundation is to stimulate biomedical research that will accelerate the development of treatments to significantly improve cognition for individuals with Down syndrome. DSRTF sees a new world coming in which people with Down syndrome are fully included in academic and social environments and where they can live independently as adults, if they so choose. In recent years, private and public services, including early intervention, special education and job training, have greatly improved the lives of those who have Down syndrome. Nevertheless, cognitive challenges make it difficult for most to live independently during adulthood, and many experience the early onset of Alzheimer's disease.

Friends of Cancer Research

Friends of Cancer Research (Friends) is a non-profit organization that, for more than a decade, has pioneered innovative public-private partnerships, organized critical policy forums, educated the public, and brought together key communities to develop collaborative strategies in the field of cancer research. Comprised of leading members of the cancer community, Friends of Cancer Research works to engage key stakeholders in the scientific, patient, government, corporate, and media sectors to identify barriers and find solutions for the most pressing issues facing cancer research today.

Gilda's Club Worldwide

Our Mission is to create welcoming communities of free support for everyone living with cancer - men, women, teens and children - along with their families and friends. Our innovative program is an essential complement to medical care, providing networking and support groups, workshops, education and social activities.The Gilda's Club philosophy of providing an emotional and social support community as an essential complement to medical treatment when cancer is in the family enables the organization to serve as a beacon for the provision of health care services in the 21st Century. It is the vision of Gilda's Club Worldwide to become the international leader for strengthening the global awareness of this philosophy, and to advance an understanding of the essential bond that emotional and social support brings to the cancer experience, not only for those living with cancer, but also for the families and friends who surround them.

Hearing Loss Association of America (HLAA)

The Hearing Loss Association of America (HLAA) is the nation's leading organization representing people with hearing loss. According to the National Center for Health Statistics 36 million (17%) American adults have some degree of hearing loss making it a public health issue third in line after heart disease and arthritis. HLAA provides assistance and resources for people with hearing loss and their families to learn how to adjust to living with hearing loss. HLAA is working to eradicate the stigma associated with hearing loss and raise public awareness about the need for prevention and the importance of regular hearing screenings throughout life.

Hereditary Neuropathy Foundation (HNF)

The Hereditary Neuropathy Foundation (HNF) is a non-profit 501(c)(3) which raises awareness, funds scientific research, and educates the medical community as well as the general public about Charcot-Marie Tooth disease (CMT), offering people with CMT, and their families, medical information and emotional support. HNF is supported by a wide cross-section of medical experts, researchers, professionals, and a huge network of individuals and families from all walks of life.

Juvenile Diabetes Research Foundation

The mission of JDRF is to find a cure for diabetes and its complications through the support of research. Type 1 diabetes is an autoimmune disease that strikes children and adults suddenly, and can be fatal. Until a cure is found, people with type 1 diabetes have to test their blood sugar and give themselves insulin injections multiple times or use a pump - each day, every day of their lives. And even with that intensive care, insulin is not a cure for diabetes, nor does it prevent its eventual and devastating complications, which may include kidney failure, blindness, heart disease, stroke, and amputation.

Lupus Foundation of America

The Lupus Foundation of America, Inc. (LFA) is the foremost national nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus and providing support, services and hope to all people affected by lupus. The LFA was established in 1977 when local lupus organizations came together to bring national attention and resources to lupus. Since that time, the LFA has evolved into the field's preeminent nonprofit lupus organization with nearly 300 chapters and support groups nationwide.

Muscular Dystrophy Association (MDA)

MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education. MDA combats neuromuscular diseases through programs of worldwide research, comprehensive medical and community services, and far-reaching professional and public health education. With national headquarters in Tucson, MDA has more than 200 offices across the country, sponsors 220 hospital-affiliated clinics and supports nearly 400 research projects around the world.

National Alliance on Mental Illness (NAMI)

From its inception in 1979, NAMI has been dedicated to improving the lives of individuals and families affected by mental illness. For three decades, NAMI has established itself as the most formidable grassroots mental health advocacy organization in the country. Dedication, steadfast commitment and unceasing belief in NAMI's mission by grassroots advocates have produced profound changes. NAMI's greatest strength is the dedication of our grassroots leaders and members. We are the families, friends and individuals that serve to strengthen communities across the country. Due in large part to generous individual, corporate, and foundation donations, NAMI is able to build on its success and continue to focus on three cornerstones of activity that offer hope, reform, and health to our American community: Awareness, Education, and Advocacy.

National Arthritis Foundation

The Arthritis Foundation is the only national not-for-profit organization that supports the more than 100 types of arthritis and related conditions. Founded in 1948, with headquarters in Atlanta, the Arthritis Foundation has multiple service points located throughout the country. The Arthritis Foundation is the largest private, not-for-profit contributor to arthritis research in the world, funding more than $380 million in research grants since 1948. The foundation helps people take control of arthritis by providing public health education; pursuing public policy and legislation; and conducting evidence-based programs to improve the quality of life for those living with arthritis.

National Brain Tumor Society

National Brain Tumor Society is a nonprofit organization inspiring hope and providing leadership within the brain tumor community. We exist to find a cure and improve the quality of life for those affected by brain tumors. We fund strategic research, deliver support services, and promote collaboration. National Brain Tumor Society (NBTS) is a leader in the brain tumor community, bringing together the best of research and patient services to be a comprehensive resource for patients, families, caregivers, researchers, and medical professionals. We have a national presence, with offices on both coasts and activities and influence around the United States.

National Coalition for Women with Heart Disease

WomenHeart is the only national organization dedicated to promoting women's heart health through advocacy, education and patient support. As the leading voice for the 41 million American women living with or at risk of heart disease, WomenHeart advocates for equal access to quality care and provides information and resources to help women take charge of their heart health. Since our inception, WomenHeart-founded by three women heart attack survivors who transformed the isolation, confusion and ignorance about women's heart disease into a rallying call to save women's lives-has been at the forefront of providing support services to women with heart disease and educating policymakers, health professionals and the public about the urgent need to make women's heart health a priority.

National Eating Disorders Association

The National Eating Disorders Association (NEDA) is a non-profit organization dedicated to supporting individuals and families affected by eating disorders. We campaign for prevention, improved access to quality treatment, and increased research funding to better understand and treat eating disorders. We work with partners and volunteers to develop programs and tools to help everyone who seeks assistance. NEDA was formed in 2001, when Eating Disorders Awareness & Prevention (EDAP) joined forces with the American Anorexia Bulimia Association (AABA) â€“ merging the largest and longest standing eating disorders prevention and advocacy organizations in the world. The merger was the most recent in a series of alliances that has also included the National Eating Disorder Organization (NEDO) and the Anorexia Nervosa & Related Disorders (ANRED).

National Kidney Foundation

The National Kidney Foundation, a major voluntary nonprofit health organization, is dedicated to preventing kidney and urinary tract diseases, improving the health and well-being of individuals and families affected by kidney disease and increasing the availability of all organs for transplantation. Through its more than 50 local offices nationwide, the NKF provides vital patient and community services, conducts extensive public and professional education, advocates for patients through legislative action and supports kidney research to identify new treatments.

National Lung Cancer Partnership

The National Lung Cancer Partnership (formerly Women Against Lung Cancer) is a 501(c)(3), non-profit organization, originally formed in 2001, and officially incorporated in 2003. Our mission is to decrease deaths due to lung cancer, and help patients live longer and better, through research, awareness, and advocacy. The National Lung Cancer Partnership is a group of leading doctors, researchers, patient advocates, and lung cancer survivors who are working together to improve treatments for lung cancer patients. We are dedicated to raising public awareness of the disease and generating funding for lung cancer research.

National Osteoporosis Foundation

The mission of the National Osteoporosis Foundation is to prevent osteoporosis and related fractures, to promote lifelong bone health, to help improve the lives of those affected by osteoporosis and to find a cure through programs of awareness, advocacy, public and health professional education and research. Established in 1984, the National Osteoporosis Foundation (NOF) is the nation's leading voluntary health organization solely dedicated to osteoporosis and bone health.

National Sleep Foundation

The National Sleep Foundation (NSF) is an independent nonprofit organization dedicated to improving public health and safety by achieving understanding of sleep and sleep disorders, and by supporting sleep-related education, research, and advocacy. Alerting the public, healthcare providers and policymakers to the life-and-death importance of adequate sleep is central to the mission of NSF. NSF is dedicated to improving the quality of life for Americans who suffer from sleep problems and disorders. This means helping the public better understand the importance of sleep and the benefits of good sleep habits, and recognizing the signs of sleep problems so that they can be properly diagnosed and treated.

The Asthma and Allergy Foundation of America (AAFA)

The Asthma and Allergy Foundation of America (AAFA), a not-for-profit organization founded in 1953, is the leading patient organization for people with asthma and allergies, and the oldest asthma and allergy patient group in the world. AAFA provides practical information, community based services and support to people through a network of Regional Chapters, Educational Support Groups and other Local Partners around the U.S. AAFA develops health education, organizes state and national advocacy efforts and funds research to find better treatments and cures. In addition, the mission of AAFA's Web site is to provide online access to AAFA's reliable, validated asthma and allergy information and tools to families, patients, parents, healthcare providers, policymakers and others.

The Coalition for Pulmonary Fibrosis (CPF)

The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure pulmonary fibrosis; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of Pulmonary Fibrosis issues; and works to improve awareness of Pulmonary Fibrosis in the medical community as well as the general public.

The Leukemia & Lymphoma Society (LLS)

The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. LLS's mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. Since the first funding in 1954, LLS has awarded more than $600 million in research funding.

The National Headache Foundation

The National Headache Foundation exists to enhance the healthcare of headache sufferers. It is a source of help to sufferers' families, physicians who treat headache sufferers, allied healthcare professionals and to the public. The NHF accomplishes its mission by providing educational and informational resources, supporting headache research and advocating for the understanding of headache as a legitimate neurobiological disease.

The National Multiple Sclerosis Society

The National MS Society is a collective of passionate individuals who want to do something about MS now-to move together toward a world free of multiple sclerosis. MS stops people from moving. We exist to make sure it doesn't. We help each person address the challenges of living with MS through our 50-state network of chapters. The Society helps people affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward.

The Obesity Action Coalition

The Obesity Action Coalition is an IRS registered 501(c)(3) National non profit organization dedicated to giving a voice to those affected by obesity. The OAC was formed to build a nationwide coalition of patients to become active advocates and spread the important message of the need for obesity education. To increase obesity education, the OAC offers a wide variety of free educational resources on obesity, morbid obesity and childhood obesity, in addition to consequences and treatments of these conditions. The OAC also conducts a variety of advocacy efforts throughout the U.S. on both the National and state levels, and encourages individuals to become proactive advocates.

Please contact Rochester Health to suggest additional national disease support organizations to be added to the current listing.

Interested in volunteering for a not-for-profit organization? Vist NY Volunteers.