ACCC 2020 Impact Report
, Vol.36, N.5
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Patient Advocacy Organizations
Below is a list of key national oncology patient advocacy groups dedicated to promoting excellence and quality cancer care. This list is meant to serve as a guide and is not all inclusive.
American Cancer Society
The American Cancer Society’s mission is to save lives, celebrate lives, and lead the fight for a world without cancer. An extensive network of information resources and organizations dedicated to eliminating cancer by providing information, education, support and research funding.
Cancer Care, Inc.
Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Their comprehensive services include counseling and support groups over the phone, online and in-person, educational workshops, publications and financial and co-payment assistance. All CancerCare services are provided by oncology social workers and world-leading cancer experts.
Cancer Support Community
As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC) is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. This global network of 175 locations, including CSC and Gilda's Club centers, health-care partnerships, and satellite locations that deliver more than $50 million in free support services to patients and families. In addition, CSC administers a toll-free helpline and produces award-winning educational resources that reach more than one million people each year. Formed in 2009 by the merger of The Wellness Community and Gilda’s Club, CSC also conducts cutting-edge research on the emotional, psychological, and financial journey of cancer patients.
Cure for Lymphoma Research Foundation
The Lymphoma Research Foundation (LRF) is the nation’s largest lymphoma-focused health organization devoted to improving care through education and support services and improving outcomes through investment in the most promising lymphoma research. The Foundation provides the most comprehensive information through evidence-based patient and professional education programs. LRF empowers patients, survivors and their loved ones to have the knowledge needed to become their own health advocate.
International Myeloma Foundation
Founded in 1990, the International Myeloma Foundation (IMF) is the first and largest organization focusing specifically on multiple myeloma. The IMF’s reach extends to more than 525,000 members in 140 countries worldwide. The IMF is dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure through our four founding principles: Research, Education, Support, and Advocacy.
Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary health agency dedicated to blood cancer. The LLS mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world and provides free information and support services. Since 1949, LLS has invested more than $1.2 billion in groundbreaking research, pioneering many of today’s most innovative approaches.
National Patient Advocate Foundation
National Patient Advocate Foundation is a 501(c)4 organization with headquarters in Washington DC. NPAF's staff and volunteers work at the local, state and national level to promote access to affordable, quality health care for people with chronic, debilitating or life-threatening illnesses. NPAF provides important thought leadership in developing policies to support our mission, working with other organizations to advocate for health care policies and collaborating with community partners to advance person-centered care.
Ovarian Cancer Research Fund Alliance
The Ovarian Cancer Research Fund Alliance is the largest global organization dedicated to advancing ovarian cancer research while supporting women and their families. OCRFA’s mission is to promote, advocate for and support scientific research as it relates to the causes, prevention, diagnosis, treatment, and cure for ovarian cancer; to provide education about ovarian cancer; to promote, advocate for and provide supportive services to persons affected by ovarian cancer; and to foster alliances to further those purposes. Since 1998, OCRFA has invested nearly $70 million in ovarian cancer research through 255 grants to scientists at 69 leading medical centers in the country.
Pancreatic Cancer Action Network
The Pancreatic Cancer Action Network is a nationwide network of people dedicated to working together to advance research, support patients and create hope for those affected by pancreatic cancer. Founded in 1999, the organization, through research, clinical initiatives, patient services and advocacy, is leading the way to increase the survival rate for people diagnosed with this devastating disease through a bold initiative — The Vision of Progress: Double the Pancreatic Cancer Survival Rate by 2020.
Patient Access Network (PAN) Foundation
The Patient Access Network (PAN) Foundation is an independent, national non-profit organization dedicated to helping federally and commercially insured people living with life-threatening, chronic and rare diseases with the out-of-pocket costs for their prescribed medications. Partnering with generous donors, healthcare providers and pharmacies, PAN provides the underinsured population access to the healthcare treatments they need to best manage their conditions and focus on improving their quality of life. Since its founding in 2004, PAN has provided nearly 1 million underinsured patients with over $3 billion in financial assistance, through close to 70 disease specific programs.
Patient Advocate Foundation
The Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation, assuring access to care, maintenance of employment, and preservation of financial stability. PAF serves as an active liaison between patients and their insurers, employers and/or creditors to resolve insurance, job retention, and/or debt crisis matters relative to their diagnosis through professional case managers and a national network of health care attorneys. PAF case managers work with patients to determine local, state, and federal programs that provide assistance for their individual needs.
Side Effect Support LLC
Side Effect Support LLC offers a convenient source for patient education and affordable chemotherapy side effect remedies to help patients manage their symptoms and the risks caused by chemotherapy and radiation treatments.