National Organization for Rare Disorders, Inc.
National Organization for Rare Disorders, Inc.
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About this organization
Mission
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
About
Patient assistance programs provide financial assistance to help eligible patients access lifesaving therapies and services prescribed by their physicians. In 2018 NORD provided financial assistance to 7,459 people with rare diseases. In addition, NORD works with organizations conducting clinical trials of new treatments in arranging for patients with rare diseases and family members to travel to the sites where the trials are being conducted. In 2018, there were 274 patients that NORD assisted as part of that special clinical trial travel assistance program.
Interesting data from their 2020 990 filing
According to the filing, the non-profit's mission is “Nord leads the fight to improve the lives of people affected by rare diseases through education, patient assistance programs, advocacy, and by promoting research.”.
When referring to its actions, they were described as: “Nord strives to improve the lives of those with rare diseases through assistance programs, education, advocacy and research.”.
- According to the law, the state of operation reported by the non-profit is NY.
- As per the filing, the address of the non-profit for 2020 is 1900 CROWN COLONY DR 3RD FL NO 310, QUINCY, MA, 02169.
- According to their form, the non-profit as of 2020 has a total of 84 employees.
- Is not a private foundation.
- Expenses are greater than $1,000,000.
- Revenue is greater than $1,000,000.
- Revenue less expenses is $13,048,281.
- The organization has 14 independent voting members.
- The organization was formed in 1983.
- The organization pays $5,580,030 in salary, compensation, and benefits to its employees.
- The organization pays $1,416,207 in fundraising expenses.