Basic Organization Information
National Organization for Rare Disorders, Inc.
- Also Known As:
- Physical Address:
- Web URL:
- NTEE Category:
G Disease, Disorders, Medical Disciplines
G99 Diseases, Disorders, Medical Disciplines N.E.C.
H Medical Research
H01 Alliance/Advocacy Organizations
- Ruling Year:
NORD represents 1 in 10 Americans who have rare diseases with programs of advocacy, education, research and patients services. It serves as the voice of the rare disease community on important issues of public policy. It also provides information on rare diseases in understandable language for patients and their families, with referrals to support groups and other helpful resources. It encourages research on new diagnostics and treatments and administers patients assistance programs. NORD mentors rare disease support groups so that they can more effectively help their members. It serves as the point of connection between the patient community and key government agencies, such as the National Institutes of Health (NIH) and Food and Drug Administration (FDA). Nearly 150 patient organizations are members of NORD and look to NORD for guidance, mentoring and leadership.
Mr. Peter Saltonstall
Peter Saltonstall has more than 30 years of healthcare experience in both for-profit and not-for-profit environments, as well as extensive federal and commercial market knowledge. He has held senior positions within a number of major academic medical centers and organizations, including Harvard's Brigham and Women's Hospital, Tufts-New England Medical Center, St. Elizabeth's Medical Center of Boston and Harvard's Risk Management Foundation. He played a key role in developing one of the nation's first patient safety management systems, and he was a leading advocate for the Patient Safety Act of 2005, which has dramatically improved the reporting of events that adversely affect patients.
Officers for Fiscal Year (IRS Form 990)
Highest Paid Employees & Their Compensation (IRS Form 990)
Patient Assistance Programs
- Population Served:
NORD works closely with humanitarian-minded pharmaceutical and biotechnology
companies to ensure that certain vital medications are available to those
individuals whose income is too high to qualify for Medicaid but too low to
pay for their prescribed medications. NORD’s programs have set the standards
for fairness, equity, and unbiased eligibility. The NORD programs have
gained respect from the patient communities, pharmaceutical companies,
healthcare professionals, government officials, and the public.
Participants have assurance that NORD protects their confidentiality.
There is no conflict of interest with respect to NORD’s eligibility
Program Long-Term Success:
Program Short-Term Success:
Program Success Monitored by:
Program Success Examples:
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Impact Summary from the Nonprofit
This organization has not provided an impact summary.