Vision & Mission
On behalf of the 30 million Americans who live with one or more of the 7,000 rare diseases
NORD’s vision and guiding principles on which our advocacy initiatives are based:
- A national awareness and recognition of the challenges faced by people living with rare diseases and the associated costs to society.
- A nation where people with rare diseases can secure access to diagnostics and therapies that extend and improve their lives.
- A social, political, and financial culture of innovation that supports both the basic and translational research necessary to create diagnostic tests and therapies for all rare disorders.
- A regulatory environment that encourages development and timely approval of safe and effective diagnostics and treatments for patients with rare diseases.
The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
History of NORD
In the decade before 1983, only 10 new treatments were brought to market by industry for diseases that today would be defined as rare. The problem was receiving little attention. Research dollars and expertise were targeted to the development of blockbuster products for common diseases.
Leaders of rare-disease patient organizations began to realize that there were certain problems their patients and families shared…problems that were common to all people with rare diseases. As a result, they raised their voices together, calling for national legislation to encourage the development of treatments for rare diseases.
A small story in the LA Times led to an episode on a popular TV show, Quincy ME. Then letters began to arrive from people all over the nation who had rare diseases and thought they were alone in their struggles. It became apparent that, while each disease may be rare, these diseases affect millions of Americans when considered together.
The ultimate result was the enactment of legislation known as the Orphan Drug Act, and the patient leaders who had worked to bring national recognition to the problem founded NORD as an umbrella organization to represent the rare disease community. From there, take a look at our highlights over the past 30+ years: http://rarediseases.org/30th-timeline.
Our team is made up of dedicated and compassionate patients, parents and advocates. We are in the fight against rare diseases alongside you fighting for all 30 million Americans – including the ones we love and have lost. We provide information, advocacy, research, and patient services to help all patients and families affected by rare diseases.