National Organization for Rare Disorders

National Organization for Rare Disorders (NORD) is a non-profit organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, established in 1983, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

History

The National Organization for Rare Disorders was founded in 1983 by individuals and families affected by rare diseases and by leaders of rare disease patient organizations, inspired by the Orphan Drug Act of 1983. The act was a critical step in addressing the need for research and development of treatments for rare diseases. Since its inception, NORD has played a pivotal role in improving the health and well-being of people with rare diseases by advocating for policies that facilitate the development of new treatments and by supporting research efforts.

Mission and Activities

NORD's mission is to act as a unified voice for the rare disease community, mobilizing support and advocating for the medical and financial needs of individuals with rare diseases. Its activities include:

• Education: Providing information and resources to patients, families, healthcare professionals, and the public about rare diseases and the challenges associated with them.
• Advocacy: Working at the state and federal levels to promote policies that improve the lives of rare disease patients.
• Research: Supporting and funding research into the causes, treatments, and cures for rare diseases.
• Patient Services: Offering assistance programs to help patients obtain life-saving or life-sustaining medication, financial assistance, and patient networking opportunities.

Rare Diseases

A rare disease is defined in the United States as a condition that affects fewer than 200,000 people. There are approximately 7,000 rare diseases affecting an estimated 30 million Americans. NORD provides information on over 1,200 rare diseases through its comprehensive database.

Orphan Drug Act

The Orphan Drug Act of 1983 was a landmark legislation that provided incentives for the development of drugs for rare diseases, known as orphan drugs. NORD was instrumental in the enactment of this act, which has led to the approval of hundreds of drugs and treatments for rare diseases.

Advocacy and Public Policy

NORD's advocacy efforts focus on ensuring that the voices of the rare disease community are heard in policy discussions. This includes advocating for increased research funding, improved access to care, and the protection of patient rights.

Research

NORD's research program supports scientific studies to understand, treat, and cure rare diseases. This includes grants for clinical research and the development of treatments.

Patient Services

NORD offers a variety of services to help patients and their families, including a Patient Assistance Program, which provides financial aid for obtaining medications; a RareCare program, which helps patients access life-saving or life-sustaining treatments; and a patient and caregiver network.

Conclusion

The National Organization for Rare Disorders continues to be a beacon of hope for the rare disease community. Through its comprehensive programs and services, NORD is making a significant impact on the lives of individuals with rare diseases and their families.

NIH genetic and rare disease info

• NIH info on National Organization for Rare Disorders

National Organization for Rare Disorders is a rare disease.