Overview
What is National Organization For Rare Disorders Inc?
The National Organization For Rare Disorders Inc, based in Quincy, Massachusetts, is a nonprofit dedicated to improving the health and well-being of individuals with rare diseases. They provide essential support through patient assistance programs, offering financial assistance to eligible patients, enabling them to access necessary therapies and services prescribed by their physicians. In 2022, NORD helped 5,472 individuals and arranged travel for 139 patients to participate in clinical trials testing new treatments. The organization's mission extends beyond assistance, as they also drive advancements in care, research, and policy for rare diseases. With a team of 123 employees, NORD is committed to making a significant difference in the lives of those affected.
Official website here: www.rarediseases.org
Is National Organization For Rare Disorders Inc legitimate?
National Organization For Rare Disorders Inc is a legitimate nonprofit organization registered as a 501(c)(3) entity. National Organization For Rare Disorders Inc submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.
Here are some key statistics you may want to consider:
Executive Compensation: $1,160,969
Professional Fundraising Fees: $0
Other Salaries and Wages: $7,336,154
For more financial information, click here
What is the mission statement of National Organization For Rare Disorders Inc?
The National Organization for Rare Disorders Inc (NORD) is dedicated to enhancing the health and well-being of individuals afflicted with rare diseases. They accomplish this by catalyzing advancements in care, research, and policy. NORD's mission extends to providing financial assistance to eligible patients, enabling them to access essential therapies and services prescribed by their healthcare professionals. In the year 2022, NORD extended financial aid to 5,472 individuals with rare diseases. Furthermore, NORD collaborates with organizations conducting clinical trials of new treatments, facilitating travel arrangements for patients and their families to attend these trial sites. In the same year, 139 patients were aided through NORD's special clinical trial travel assistance program.
Official website here: www.rarediseases.org
Who is the CEO of National Organization For Rare Disorders Inc?
Neeta Kotecha is the President/Ceo of National Organization For Rare Disorders Inc. The CEO's salary of National Organization For Rare Disorders Inc is $493,155 and their total compensation is $519,022.
Official website here: www.rarediseases.org
What is the revenue of National Organization For Rare Disorders Inc?
National Organization For Rare Disorders Inc's revenue in 2022 was $59,872,383.
Official website here: www.rarediseases.org
Who are the executives of National Organization For Rare Disorders Inc and what are their salaries?
The average compensation at National Organization For Rare Disorders Inc during 2022 was $69,082. There are 123 employees and 936 volunteers at National Organization For Rare Disorders Inc.
Here are 21 key members and their salaries (National Organization For Rare Disorders Inc's CEO's salary is $493,155 and their total compensation is $519,022):
- Peter Saltonstall (President/Ceo) [Trustee/Director]
- Pamela Gavin (Executive Vice President)
- Edward Neilan (Chief Medical & Scientific Officer)
- Prashant Goel (Vp Information Technology)
- Alexa Moore (Vp Of Development)
- Jill Pollander (Vp Patient Services)
- Vincent J Murphy Jr (Vp Finance (Until 10/7/2022))
- Heidi Ross (Vp Policy & Regulatory Affairs)
- Neeta Kotecha (Vp Finance)
- Kathleen Holcombe (Chair) [Trustee/Director]
- Mark Skinner (Vice Chair) [Trustee/Director]
- Leon Eidelman (Treasurer) [Trustee/Director]
- Steven Grossman (Secretary) [Trustee/Director]
- Susan Hedstrom (Director)
- Jim Palma (Director)
- Susan Berry Md (Director)
- Shafali Jeste Md (Director)
- Phillip Pearl Md (Director)
- Mike Porath (Director)
- Dennis Jackman (Director)
- Frederick Barr Md (Director (Until 9/14/2022))
Official website here: www.rarediseases.org
Where can I find the form 990 for National Organization For Rare Disorders Inc?
The National Organization For Rare Disorders Inc’s most recent form 990 was submitted in 2022 and can be accessed here
Official website here: www.rarediseases.org
Learn more at the official website: www.rarediseases.org
Mission Statement of National Organization For Rare Disorders Inc
The National Organization for Rare Disorders Inc, commonly known as NORD, is a nonprofit organization dedicated to enhancing the lives of individuals with rare diseases. With a mission to drive improvements in healthcare, research, and policy, NORD strives to make a significant impact in the lives of those affected by these conditions.
NORD's primary focus lies in providing essential services and financial assistance to individuals with rare diseases. Through its Patient Assistance Programs, the organization offers financial aid to eligible patients, enabling them to access life-saving therapies and services prescribed by their healthcare professionals. In the year 2022 alone, NORD extended assistance to over 5,400 individuals with rare diseases, providing crucial support that made a difference in their lives.
Moreover, NORD collaborates with organizations conducting clinical trials for new treatments, arranging travel for patients and their families to attend these trial sites. In 2022, 139 patients benefited from NORD's Special Clinical Trial Travel Assistance Program, marking an essential contribution to the advancement of rare disease treatment and care. Despite the challenges posed by rare diseases, NORD remains committed to its mission, continually striving to improve the health and well-being of those affected by these conditions.
Impact
This information is meant to be a general summary of National Organization For Rare Disorders Inc. Please take the time to review official sources before making any decisions based upon the content provided here.
Thursday, August 15, 2024
National Organization For Rare Disorders Inc, through its patient assistance programs, has made a significant impact on the health and well-being of people with rare diseases. In 2022, NORD provided financial assistance to 5,472 individuals with rare diseases, helping them access life-saving therapies and services prescribed by their physicians. Additionally, NORD collaborates with organizations conducting clinical trials of new treatments, arranging for patients with rare diseases and their family members to travel to trial sites. In 2022, NORD assisted 139 patients through this special clinical trial travel assistance program. These efforts contribute to driving advances in care, research, and policy for individuals with rare diseases across the country.
Financials
This financial information is from Propublica.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2022.
- Assets and Liabilities:
Programs
Programs are reported by nonprofits in their tax forms and are normally their tax-exempt activities.
PATIENT ASSISTANCE FEE
Revenue
$5,166,745
PROGRAMMATIC EVENTS AN
Revenue
$1,768,401
REGISTRY, WEB SUBSCRIP
Revenue
$781,560
RESEARCH FEES
Revenue
$251,881
DRUG, TRAVEL AND LODGI
Revenue
$102,071
Organization Details
Founding Year
1983
Phone
(617) 249-7300
Principal Officer
Neeta Kotecha
Main Address
1900 CROWN COLONY DR 3RD FL 310, QUINCY, MA, 02169
Website
www.rarediseases.org
NTEE Category
Code: G50 - Disease
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