NORD works with many partners to achieve to advocate for better and fuller lives for individuals with rare diseases.
Alliance for Healthcare Reform
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.
Alliance for a Stronger FDA
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.
Medication Access for Patients Rx (MAPRx)
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.
Coalition for Accessible Treatments (CAT)
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.
State Access to Innovative Medicines Coalition (SAIM)
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.
United States Pharmacopoeia (USP)
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.
Regulatory Education and Action for Patients (REAP)
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.
American Plasma Users Coalition (A-PLUS)
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.
National Health Council (NHC)
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
The mission of Osmosis is to empower the world’s clinicians and caregivers with the best learning experience possible. NORD and Osmosis are partnering to develop rare disease education for medical students, professionals and caregivers. Learn more about Osmosis
PlatformQ is a leader in provider digital engagement solutions in healthcare and education. NORD and PlatformQ partner to bring continuing medical education (CME) content to learners in an interactive digital environment. Learn more about PlatformQ
Critical Path Institute (C-Path)
The Critical Path Institute is a non-profit organization created to improve the drug development process; its consortia include more than 1,600 scientists from government regulatory and research agencies, academia, patient organizations, and bio-pharmaceutical companies. NORD and C-Path are partnering on the development of an FDA-funded initiative, The Rare Disease Cures Accelerator – Data and Analytics Platform (RDCA-DAP®) as well as clinical outcomes assessments. Learn more
Clinical Data Interchange Standards Consortium
The Clinical Data Interchange Standards Consortium is a standards developing organization dealing with medical research data linked with healthcare, to “enable information system interoperability to improve medical research and related areas of healthcare”. NORD and CDISC are partnering to develop global data standards for rare diseases. The data standards will be released in a Therapeutic Area User Guide that will be available at no cost on the CDISC website for researchers to leverage in studies to maximize data’s full potential. Learn more
Bespoke Gene Therapy Consortium (BGTC)
The Accelerating Medicines Partnership® Bespoke Gene Therapy Consortium (BGTC) brings together partners from the public, private, and non-profit sectors to foster development of gene therapies intended to treat rare genetic diseases. Coordinated by the FNIH, the BGTC focuses on a single gene delivery technology, adeno-associated virus (AAV), one of the safest platforms for gene delivery to address a variety of human diseases. The program’s primary aims include pursuing an in-depth understanding of basic AAV life cycle biology, which will facilitate optimization of vector generation and delivery, as well as standardizing and streamlining regulatory requirements for approval of gene therapies for ultra-rare and bespoke diseases. NORD is a BGTC private-sector partner. Learn more about the BGTC