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National Organization for Rare Disorders, Inc.

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Nonprofit Overview

Causes: Health, Specifically Named Diseases, Voluntary Health Associations & Medical Disciplines

Mission: 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.

Programs: Patient services provides patient assistance programs including free drug, premium and co-pay assistance, travel and lodging assistance for clinical trials, and expanded emergency and ancillary access programs.

membership and education provides training and mentoring to assist rare disease patient organizations in achieving the highest possible level of service to their members while adopting best practices and adhering to accepted non-profit standards. Also, patient and family education, health professional education, and public awareness programs are offered through extensive online, electronic, in-person, and in-print educational resources and programs.

research and medical and scientific affairs administers a program of grants and fellowships to support research on rare diseases funded by contributions from the public, patients and their families, and patient organizations.

advocacy serves as the liason between the rare disease community and national institutions that have a direct impact on the health of the thirty million americans living with rare diseases, including the u. S. Congress, food and drug administrations, and national institutes of health.

Community Stories

5 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

My experience with NORD was fantastic, and they are a great advocate for rare disease patients

1

Client Served

Rating: 1

A representative from NORD made me cry today when applying for financial assistance for my son's rare disorder. I could not believe how insensitive she was. Then, when I called to see if I could work with someone else, the supervisor who later contacted me only left the main number so I could not call her back directly. It makes me very sad that an organization that is supposed to support patients with rare disorders and their families treats people this way and I hope it is not typical.

Review from CharityNavigator

1 Todd T.

Client Served

Rating: 5

As a Father of a daughter with a rare disease, I can't begin to describe how important NORD has been to our family. When Gaby was diagnosed in 2006 we had no where to turn with a condition that affects 1 in 2 Million. Until we found NORD! NORD is the mother ship for all us very small rare disorders like APS Type 1. When we were first introduced and got involved they were critical to providing a wealth of information about the condition...providing us with contacts that assisted us in creating our own website, and supporting us with fundraising through their restricted research grant program. So far we have 3 research projects through NORD and our working on our 4th. If you've had trouble with connectivity with NORD...I recommend contacting them again, I'm confident that the people I've interacted with are very interested in each and every one of us living day to day with the challenges of rare disorders.

Mike S.

Board Member

Rating: 3

I am a new Board member of NORD who is absolutely focused on ensuring that NORD ensures its relevance and importance to the patient community and the patient organizations that it serves.

NORD knows that it needs to do more than be the protector of the Orphan Drug Act. It has a new leadership team, and that leadership team has recently developed a new set of advocacy principles that we believe reflect the needs of patients with rare diseases. These include:

-- 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.

There is a GREAT deal more that we need to do ... and I look forward to helping the leadership and the staff of NORD to make sure we succeed in achieving these new goals.

1

General Member of the Public

Rating: 1

rarediseases.org is far removed from knowing the patients they serve.

Review from CharityNavigator