The IMF is dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure by focusing on four key areas: research, education, support, and advocacy.
Prader‐Willi Syndrome Association | USA was formed in 1975 to unite parents, professionals, and other interested citizens to enhance the quality of life of those affected by Prader‐Willi syndrome. PWSA | USA empowers the PWS community through shared experiences, research, education, advocacy, and support. With chapters in most states, ours is the only national PWS support organization whose sole purpose is to assist individuals with the syndrome, and their families, every step of the way.
The Scleroderma Foundation of Greater Washington DC, founded in June of 1991, is dedicated to serving the scleroderma community and driving progress towards a cure.
Since 1989, the Scleroderma Foundation of California has served the scleroderma community across California, Arizona, Hawaii, and Nevada. We envision a future where all scleroderma patients receive timely diagnosis and comprehensive care until we find a cure. Our mission is to empower the scleroderma community to live better lives through programs focused on support, education, and research.
Progress in improving cancer outcomes increasingly involves the use of precision medicine. Biomarker testing is an important step for accessing precision medicine including targeted therapies that can lead to improved survivorship and better quality of life for cancer patients.
The Chronic Care Policy Alliance (CCPA) is a network of state and regional advocacy organizations advancing public policy that improves the lives of those living with chronic conditions and diseases.
The Coalition to Protect Parenthood After Cancer (CPPAC) is an all-volunteer collaboration of nonprofit organizations, patient advocates, academic researchers, health care professionals and companies working to preserve the opportunity for parenthood after treatment for cancer and other diseases by advocating for insurance coverage of fertility preservation, thus helping patients have biological children in the future.
Colorado Patients Taking Action
We are a coalition of patients, healthcare providers and advocates working to ensure that patients’ voices are heard, patients’ rights are respected, and patients’ needs are prioritized in healthcare policy.
The COPD Action Alliance is an advocacy coalition that helps to increase awareness, support grassroots advocacy and improve COPD policy.
The Ensuring Access through Collaborative Health (EACH) and Patient Inclusion Council (PIC) is a two-part coalition that unites patient organizations and allied groups (EACH), as well as patients and caregivers (PIC), to advocate for drug affordability policies that benefit patients. Our focus is on state level Prescription Drug Affordability Boards (PDABs) and the Centers for Medicare and Medicaid Services (CMS) Inflation Reduction Act (IRA) drug price negotiations.
Advocating for policies that promote generic competition and efficient approval of generic medicines.
HIA is a coalition of the nation’s most powerful names in technology and healthcare, working to create value for patients by transforming care, improving connectivity, enhancing patient access, and streamlining the regulatory process.
Leaders Engaged on Alzheimer's Disease (LEAD Coalition) is an independent national coalition of more than 90 member organizations committed to improving quality of life among people facing dementia while advancing science to prevent, slow and eventually cure the underlying diseases and disorders.
Out-of-pocket costs have become financially devastating for an increasingly large segment of American society, representing people of every background. The need to lower these costs has never been higher. It is time to come together to advocate for common sense action solutions. The Lower Out-of-Pockets NOW coalition comprises representatives from health care, business, patient groups, and a broad range of other organizations that have pledged to work together to advocate for those solutions.
The Patient Pocket Protector Coalition brings together a diverse group of chronic illness stakeholders to form a unified coalition that advances our purpose through political action. With a united voice, policy insight and actionable engagement we are sharply focused on addressing Pharmacy Benefit Manager (PBM) rebate reform to protect the pockets of patients burdened with the high cost of managing their health every day.
We work with state legislators to introduce patient-first policies addressing the financial burdens of the 133 million Americans living with chronic illnesses, beginning with rebate reform.
Many people are having to make tough decisions about where to spend their money.
Patients shouldn't have to choose between paying for the cost of their medications and the rest of life's necessities. That's exactly what's happening to thousands of patients across New England.
Insurance companies are constantly putting patient health at risk by covering less and less of the cost of critical medications.
Has this happened to you?
Now lawmakers are working to change that and Patients for Prescription Access wants to help make sure everyone in the state can afford the medications they need to live a healthy life.
The Rare & Ready Coalition advocates for policies that ensure those living with rare or genetic conditions get the care they need, when they need it. The rare disease community deserves access to FDA-approved therapies as soon as they are available. We work together to mitigate state hurdles that limit access.
Aimed Alliance is a 501(c)(3) not-for-profit health policy organization. The mission of Aimed Alliance is to protect and enhance the rights of health care consumers and providers. The vision of Aimed Alliance is a society in which consumers, in consultation with their health care providers and loved ones, can make informed and individually appropriate decisions about their health care, and those decisions are not overridden by third parties.
Dollar For crushes hospital bills by making hospital financial assistance known, easy, and fair. Dollar For has the tools and expertise to ensure every eligible patient gets the help they deserve—both by eliminating bills for individual patients and by supporting policy to make hospital financial assistance work as it was intended.
Shaping How The World Thinks About Aging. We’re the world’s leading business voice on aging-related policy and strategy.
The Memory Connection is a 501(c)(3) non-profit organization dedicated to enhancing the quality of life for individuals living with dementia and their caregivers. Founded by compassionate advocates with personal experiences in dementia care, The Memory Connection was established to bridge the gap between available resources and the actual needs of families facing the unique challenges of dementia care.
Triage Health provides free education on legal and practical issues to help you navigate health care, through resources, materials, and events. This is especially important when navigating a chronic or serious medical condition. Triage Healt h is a program of Triage Cancer®.
We Work For Health brings together national and local business leaders, and labor, biopharma, patient advocacy and other healthcare-related stakeholders to support policies and initiatives that foster innovation and facilitate the delivery of lifesaving and life-enhancing medicines.
As the bedrock of innovative jobs in the U.S. today, the life sciences sector supports more than 4.9 million American employees. Advancing and protecting these jobs is critical for those employees, the economies they support and the patients they serve.
PatientRightsAdvocate.org is a 501(c)(3) nonprofit, nonpartisan organization focused on ushering in systemwide healthcare price transparency. Through advocacy, testimony, media, legal research, and grassroots campaigns, our organization seeks actual, upfront healthcare prices that will greatly lower costs through a functional, competitive healthcare marketplace.