NORD works with many partners to achieve its advocacy goals. Current alliances include:
This partnership of patient advocates monitors the implementation of the Affordable Care Act to help ensure that relevant elements of the bill for the rare disease community take effect in a way that benefits patients. Visit the Alliance for Healthcare Reform website.
The Alliance for a Stronger FDA includes members from the nonprofit consumer, patient, and biomedical research community as well as health professionals, trade associations, and companies. The Alliance’s goal is to ensure that the Food & Drug Administration has the resources it needs to protect patients and consumers. Visit the Alliance for a Stronger FDA website.
MAPRx is a coalition of patient, family caregiver and health professional organizations committed to safeguarding the well-being of patients with chronic diseases and disabilities under Medicare Prescription Drug Coverage. MAPRx member organizations collaborate with national and state policymakers to ensure that beneficiaries have the access to the medication therapies they need and deserve. Read more about MAPRx.
The Coalition for Accessible Treatments represents millions of Americans who live with chronic and rare diseases and conditions, and the physicians who treat them. CAT’s goal is to ensure all Americans have access to critical life-changing and life-saving medications by passing the Patients’ Access to Treatments Act (PATA). PATA would improve access to vital medications by addressing the issues of specialty tiers and co-insurance in the commercial health insurance market.
The State Access to Innovative Medicines (SAIM) Coalition brings together national representatives from the patient advocacy, health care provider, and life sciences communities to provide support to the many state-based grassroots communities to respond to recent troubling trends in benefit design. This includes the growing prevalence of burdensome patient cost-sharing and the increasing use of utilization management. The coalition’s purpose is to provide support to the many state-based grassroots communities that, in response to these same trends, have begun working in state capitols to win the laws and regulations that would protect and improve access to medicine.
Partners for Better Care is a partnership of patient advocacy groups and industry leaders representing more than 100 million people living with chronic conditions nationwide. Partners and its member organizations are united behind the tenets of a bipartisan Patient Charter—a definitive policy roadmap that aims to make health care more accessible, transparent and affordable. Partners for Better Care helps patients and their allies by advocating for the next generation of health care based on key principles of patient-centered quality care, availability, transparency and affordability. Read more about Partners for Better Care.
The United States Pharmacopeia (USP) is a non–governmental, official public standards–setting authority for prescription, over–the–counter medicines and other healthcare products manufactured or sold in the United States. USP also sets widely recognized standards for food ingredients and dietary supplements. Read more about the United States Pharmacopeia.
Research!America is the nation’s largest not-for-profit public education and advocacy alliance working to make research to improve health a higher national priority. It urges Congress and the administration to fund government agencies at levels that keep pace with scientific opportunity. It also advocates for federal funding for global health research and a legislative and regulatory climate that stimulates growth in industry research and development. NORD was one of Research!America’s initial supporters in 1989 and the two organizations continue to collaborate on research issues. Learn more about Research!America.
REAP is an umbrella coalition comprised of 61 patient advocacy groups whose mission is to communicate collaborative perspectives on proposed rules and specific legislative priorities to Federal and State policymakers. REAP’s collective voice assures a wide range of patient concerns are considered in policy development to maximize care access and improved outcomes as well as minimize unintended consequences upon implementation of proposed rules. REAP, through its member entities, contributes information and perspectives regarding important health care decisions to a degree that is new for health care advocacy groups working collaboratively in the regulatory arena.
Patients for Biologics Safety & Access (PBSA) is a national coalition representing more than 20 patient advocacy organizations working to ensure that the voices and interests of patients are heard as the FDA considers approval of a new category of drugs known as biosimilars. For more information on PBSA, visit the PBSA website.
The American Plasma Users Coalition (A-PLUS) is a coalition of national patient organizations created to address the unique needs of patients with rare diseases that use life-saving plasma protein therapies. The organizations representing these patients share a common desire to ensure that the patient voice is heard when relevant public policies, regulations, directives, guidelines, and recommendations which have a major impact on their access to safe and effective therapy and treatment are considered. Together, the coalition represents more than 125,000 Americans living with chronic disorders dependent upon plasma protein therapies for their daily living.
Founded in 1920, the National Health Council (NHC) is the only organization that brings together all segments of the health community to provide a united voice for the more than 133 million people with chronic diseases and disabilities and their family caregivers. Made up of more than 100 national health-related organizations and businesses, the NHC’s core membership includes the nation’s leading patient advocacy organizations, which control its governance. Other members include professional and membership associations, nonprofit organizations with an interest in health, and major pharmaceutical, medical device, health insurance, and biotechnology companies. Learn more about the National Health Council