The National Organization for Rare Disorders (NORD) is the leading independent patient advocacy organization representing all individuals and families affected by rare diseases in the United States. Alongside a growing network of disease-specific member organizations, professional patient advocacy groups, and industry partners, NORD improves lives, empowers patients and caregivers, and provides the right information and resources at the right time.
From top to bottom, NORD is a tried-and-true champion and thought leader for the rare community, leading the charge to eliminate the struggle of rare diseases once and for all.
NORD fundamentally believes that every person living with a rare disease has a right to their best health and well-being. With that belief as our guide, we advocate for and implement solutions that help alleviate the day-to-day burdens and challenges facing our community.
Who We Are
NORD improves care, advances research, and drives policy for the over 25 million Americans living with rare diseases. We support and uplift individuals and families, more than 330 patient advocacy member organizations, numerous researchers and healthcare providers, and more.
NORD began as a collective of patients and caregivers advocating for the Orphan Drug Act in 1983. In the four decades since our founding, NORD has led the way to eliminate the struggle of rare diseases once and for all.
NORD celebrates our past as we strive to advance our present and secure a brighter future. Today, two of our prominent initiatives include our Rare Disease Centers for Excellence, a nationwide network of cutting-edge facilities that provide standards of specialized care and disease management, and the IAMRARE Research Program and platform, which allows patients and organizations to shape medical research by collecting the data needed to define the natural progression of their disease.
NORD will continue to grow and impact lasting change, so that we can meet the needs of the national and global rare community for many years to come.
NORD’s Network, Partners, and Family
NORD embodies the community we serve. We have made an impact by building, fostering, and connecting individuals, organizations, and stakeholders of the rare disease community. From rare disease patients, to friends and caregivers, to advocates, researchers, and physicians – NORD believes in the power of bringing everyone to the same table.
Collaboration will help us achieve the ultimate goal – identifying, treating, and curing rare diseases.
ADVOCACY ORGANIZATIONS: NORD’s integrity, trust, and elevation of the unbiased patient voice starts and ends with our over 330 member organizations, a group of incredible nonprofit and patient advocacy organizations around the country.
CORPORATE COUNCIL: Anyone affected by a rare disease can count on our 40-year history, vast industry connections, and the true strength that comes from having an organizational powerhouse in their corner. In 2021, NORD welcomed 25 new Corporate Council members, bringing our network of companies engaging with experts in the rare community to 128.
BOARD OF DIRECTORS: NORD’s Board is a key decision-making governance body and includes representatives of NORD member organizations as well as individuals who have demonstrated relentless and visionary leadership in serving the rare disease patient community.
RARE ACTION NETWORK: By harnessing the power of action, storytelling, training and resources, NORD has made the rare voice essential at the local, state, and national level. NORD’s Rare Action Network® features more than 18,000 engaged volunteers and advocates across the country, mobilizing in pursuit of equitable access to timely diagnosis, treatment and care for every person impacted by a rare disease.
Hand-in-hand with our partners, members, advocates, and growing team, NORD has made massive strides in innovation, advocacy, education, and strategic leadership in the rare disease space.
“Alone we are rare. Together we are strong.”
The Greater NORD Family
We coalesce members of the community so that together we can address and advance the complex issues facing people living with rare diseases. The NORD family includes: individuals with rare diseases, their family and friends, physicians, researchers, and advocates.
Our belief is that the Center of Excellence program is the next big stride forward for rare disease treatment and patients—to improve health equity and create critical new connections to resources and specialists across our nation. NORD is committed to breaking down silos and building bridges so that people living with a rare disease can achieve their best health and well-being.
—Ed Neilan, Chief Scientific and Medical Officer, NORD