Patient Advocacy Groups
Patient advocacy groups are a critical component of the fight against cancer. More than 250 cancer-related advocate groups are in operation on a national or regional level, and these groups have thousands of members and advocates working to make a difference in the lives of millions.
The following list serves as a guide and is not all inclusive. If you would like to have your patient advocacy group listed, please contact ACCC's Corporate Communications Department.
American Bladder Cancer Society
The American Bladder Cancer Society a nonprofit organization focused on bladder cancer advocacy and survivor support. Their website offers survivors and the people that care for them an active online support community. The site offers blogging, weekly support chats, and a forum to name a few features.
Blood and Marrow Cancer
Blood and Marrow Transplant Information Network
Dedicated to serving the needs of persons facing a bone marrow, blood stem cell or umbilical cord blood transplant. Provides medical information in easy to understand language, publishes patient guides and maintains support network of transplant survivors.
The Bone and Cancer Foundation
The Bone and Cancer Foundation (BCF) is an important new information and education resource for patients, their physicians, and others concerned with the care and treatment of cancer that spreads to the bone. BCF provides information through print publications, which are free of charge.
National Marrow Donor Program
Facilitates blood stem transplants, maintains registry of volunteer donors, offers matching services, offers education about transplants and conducts research.
American Brain Tumor Association is a complete source of information about brain tumors, treatment options, clinical trials and living with a brain tumor. Services include more than 40 publications, free social work consultations, a nationwide database of established support groups, and a pen-pal program.
Children's Brain Tumor Foundation. The mission of the Children's Brain Tumor Foundation is to improve the treatment, quality of life and long-term outlook for children with brain and spinal cord tumors.
National Brain Tumor Society
Provides educational materials and programs for patients and families affected by a brain tumor.
Avon Breast Health Outreach Program was created by Avon to reach the women most in need of breast cancer screening and treatment by providing outreach to medically undeserved women.
Bosom Buddies produces videotapes to help newly diagnosed breast cancer patients and their families.
Breast Cancer Options provides support and information about effective treatment options, informed patient choice and cancer risk reduction. Their email update, Breast Cancer News, has information on Complementary/Alternative Medicine, Environmental Risk Factors as well as traditional medicine choices. They also have a message board and discount vitamin club.
Expedition Inspiration raises awareness and money to benefit breast cancer research.
Facing Our Risk of Cancer Empowered (FORCE) is a support and information site for women at risk of hereditary breast and ovarian cancer due to family history BRCA genetic status.
Her2Support.org is an online support group for women whose tumors are HER2-Positive.
Inflammatory Breast Cancer Support (IBCS) provides an email exchange capability for patients with inflammatory breast cancer.
Inflammatory Breast Cancer Research Foundation
The IBC Research Foundation is the ONLY cancer research organization which specifically targets IBC and the research to find its cause.
Living Beyond Breast Cancer (LBBC)'s mission is to empower all women affected by breast cancer to live as long as possible with the best quality of life.
The Love/Avon Army of Women is an initiative of the Dr. Susan Love Research Foundation and offers an opportunity for women to partner with research scientists to move breast cancer beyond a cure.
My Breast Cancer Coach is designed to help people affected by breast cancer better understand their disease and treatment options. Presented by breastcancer.org; Breast Cancer Network of Strength; and Genomic Health, Inc.
National Breast Cancer Coalition (NBCC) is a grassroots advocacy organization dedicated to fighting breast cancer.
The National Breast Cancer Foundation provides information, including early signs and symptoms of breast cancer, myths, early detection, breast cancer research and more.
Sisters Network, Inc.
A national African-American breast cancer survivorship organization. SNI promotes the importance of breast health through empowerment, support, breast education programs, resources, information, and research. Membership is 3000, which includes over 40 affiliate chapters nationwide.
The Susan G. Komen Foundation
The Susan G. Komen Foundation is a leader in the fight against breast cancer through its advancement of research, education, screening, and treatment.
Women's Information Network About Breast Cancer (WIN ABC) is dedicated to increasing public awareness about breast cancer and ensuring that individuals from all cultural and socioeconomic backgrounds receive equal and rapid access to quality health care based on evidence-based treatment guidelines and state-of-the-art support, education and information about the disease.
Y-ME provides a 24 hour hot line staffed by peer-trained counselors who are breast cancer survivors. Phone: 1.800.221.2141 In English and 150 other languages.
The Young Survival Coalition is dedicated to the concerns and issues that are unique to young women and breast cancer. YSC seeks to educate the medical, research, breast cancer and legislative communities and to persuade them to address breast cancer in women ages 40 and under.
Cancer Information is a sanofi-aventis-sponsored resource for those living with cancer.
The Minnie Pearl Cancer Foundation
Our mission is to improve the lives of adults impacted by cancer through support, education and access to clinical research.
An ASCO-maintained online resource designed to help people with cancer and their families better understand the disease, its causes and its treatment.
American Childhood Cancer Organization (ACCO) provides information, support, and advocacy for families of children with cancer, survivor of childhood cancer, and professionals who work with them.
Children's Brain Tumor Foundation's mission is to improve the treatment, quality of life and long-term outlook for children with brain and spinal cord tumors.
The Ulman Cancer Fund for Young Adults
Provides free support, education and resources to benefit young adults, their families, and friends who are affected by cancer.
Addresses the needs of children who have a parent diagnosed with cancer.
Patient Advocate Foundation's Colorectal CareLine is a patient/provider hotline designed to provide case management assistance to patients who have been diagnosed with colorectal cancer and are seeking education and access to care.
Colon Cancer Alliance provides support and information services to those battling colorectal cancer and is an organization made up of colon and rectal cancer survivors, caregivers, and people with a genetic predisposition to colorectal cancer.
Fight Colorectal Cancer mission is to eliminate suffering and death due to colon and rectal cancer through advocacy. 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.
The Esophageal Cancer Awareness Association (ECAA)'s mission is to promote quality of life for those affected by esophageal cancer.
Provides reproductive information, support, and hope to cancer patients whose medical treatments present risks of infertility.
The Kidney Cancer Association is a membership organization made up of patients, family members, physicians, researchers, and other health professionals.
Leukemia and Lymphoma
Lymphomation.org provides a helping hand from patient to patient by sharing evidence-based information and voicing the patient perspective in the fight against NHL.
The Leukemia and Lymphoma Society
The Society is a national voluntary health agency dedicated solely to seeking the cause and eventual cure of leukemia, lymphoma, multiple myeloma and Hodgkin's disease.
Lymphoma Research Foundation
Promotes research, provides education and raises awareness of lymphoma.
The Lung Cancer Alliance provides a hotline and website, phone buddies program, The Lung Cancer Manual, a quarterly newsletter, Lung Cancer Resource Guide and other education and support programs.
National Lymphedema Network's mission is to standardize quality treatment for lymphedema patients nationwide. In addition, the NLN support research into the causes and possible alternative treatments for lymphedema.
The Melanoma Research Foundation supports medical research for finding effective treatments and eventually a cure for melanoma. The Foundation acts as an advocate for the melanoma community to raise awareness of the disease and the need for a cure. It also educates patients and physicians about the prevention, diagnosis, and treatment of melanoma.
The International Myeloma Foundation helps anyone battling multiple myeloma – patients, family, friends, caregivers and the medical and scientific communities. The IMF also has a hotline where people can call to get case specific questions answered.
The IMF focuses on the following four goals: funding research, raising awareness, providing information, and building collaboration.
The Multiple Myeloma Research Foundation (MMRF) was founded in 1998 to urgently and aggressively fund research that will lead to the development of new treatments for multiple myeloma.
Oral, Head and Neck Cancer
Survivor-to-survivor network providing information, support and encouragement for people with oral, head and neck cancer.
The Oral Cancer Foundation is a national public service, non-profit organization designed to reduce suffering and save lives through prevention, education, research, advocacy, and support. Oral cancer is the largest group of those cancers which fall into the head and neck cancer category, and includes mouth cancer, tongue cancer, and throat cancer. Each year in the US, approximately 30,000 people are newly diagnosed with oral cancer. The Foundation's website provides information about the rates of occurrence, risk factors which lead to oral cancer, treatments, current research, and current oral cancer related news. A patient/survivor forum is open to the public where those currently fighting oral cancer can gain insights and inspiration.
FORCE is a support and information site for women at risk of hereditary breast and ovarian cancer due to family history or BRCA genetic status.
National Ovarian Cancer Coalition
Promotes awareness and provides education & referrals fro people affected by ovarian cancer.
The Lustgarten Foundation for Pancreatic Cancer Research mission is to advance the scientific and medical research related to the diagnosis, treatment, cure, and prevention of pancreatic cancer.
The Pancreatic Cancer Action Network (PanCAN) provides public and professional education that embraces the urgent need for more research, effective treatments, prevention programs, and early detection methods.
Patient Advocacy Training
The Center for Patient Partnerships trains graduate and professional students in patient advocacy. These students work with people facing serious chronic or life-threatening conditions. The Center is affiliated with the University of Wisconsin Schools of Law, Medicine & Public Health, Nursing, and Pharmacy.
Male Care: prostate cancer treatment and survival articles written by patient and doctors, updated wwith new articles every week, by the international non-profit organization, Malecare.
Zero: The Project to End Prostate Cancer increases research funds from the federal government to find new treatments and funds local grants to end prostate cancer through its national race series, The Great Prostate Cancer Challenge. It also conducts free testing and educates patients, families and those at risk.
Us TOO provides information, counseling and educational meetings to assist men with prostate disease in making decisions about their treatment with confidence and support.
Strives to extend and improve the lives of sarcoma patients through accurate diagnosis, improved access to care, guidance, education and support.
Testicular Cancer Resource Center (TCRC) provides accurate and timely information and support on all aspects of testicular cancer and extragonadal germ cell tumors.
Thyroid Cancer Survivors Association, Inc. is a national nonprofit organization of thyroid cancer survivors, families, and healthcare professionals, guided by our Medical Advisory Council of thyroid cancer specialists. The website maintains current information about thyroid cancer and support services available to people at any stage of testing, treatment, or lifelong monitoring for thyroid cancer, as well as their caregivers.