Over 1.8 million nonprofits and charities for donors, volunteers and funders

2019 Top-Rated Nonprofit

The National Organization For Rare Disorders

2,345 pageviews

Claim This Nonprofit

More Info

Add to Favorites

Share this Nonprofit

Donate

Nonprofit Overview

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

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.

Target demographics: rare disease patients and their families

Geographic areas served: The United States

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

27 Stories from Volunteers, Donors & Supporters

Donor

Rating: 5

NORD is a wonderful resource for those with rare diseases. My son suffers from a rare disease and NORD provides support and resources/research for so many individuals just like him. We are thankful for their efforts! I had the privilege of taking part in a Running for Rare event in New York City and what an amazing opportunity from a great organization. Kudos to them and keep doing what you are doing!

Previous Stories
1

Client Served

Rating: 5

NORD has been instrumental in assisting us with information regarding my child’s rare disease. They are knowledgeable and help drive the research process for all rare diseases farther. I am glad I found NORD and appreciate all of the work they put into researching rare diseases.

Client Served

Rating: 5

NORD has been such a blessing to me! From help with finding info about my disorder to medical assistance, I wouldn't be where I am today without their help!!!

General Member of the Public

Rating: 5

NORD is an incredible organization for those who are suffering with a rare disease. Their hard work and available resources help those in various communities suffering with a rare disease get the necessary information they are looking for during a very stressful time in their lives. Thank you NORD for all that you do!

Previous Stories
1

Client Served

Rating: 5

I have a grandson with NF1. NORD has been a great resource for my family. Families need to understand that they are not alone. It is organizations such as NORD that help walk you through understanding the disease and other great benefits come with that!

Dr. Neena Nizar

General Member of the Public

Rating: 5

A truly wonderful organization that allows rare patients to connect with patient leaders, researchers and a wealth of resources. I always inspired by the commitment, resilience and expertise of all those at NORD to bring about a truly patient-centric experience!

1

Board Member

Rating: 5

NORD is an outstanding organization! The help that NORD provides to the 7000 rare disorder communities cannot be measured. We are currently talking with NORD about setting up a registry for our rare disorder. I attend NORD functions and interact with NORD staff, who are top notch. I have learned so much from NORD staff, other leaders I've met through NORD, and medical professionals I've met at NORD functions.

1 Gina P.3

Professional with expertise in this field

Rating: 5

NORD has been a “game changer” for those who have a rare disease. Many conditions are served by small organizations. The resources NORD provides including education and networking enable these organizations to increase their impact greatly. It also amplifies the collective voices of the community to speak as one.

1

Volunteer

Rating: 5

NORD does so much wonderful work for the rare disease community. My 7 yr old granddaughter has a rare terminal genetic disorder called Metachromatic Leukodystrophy (MLD). NORD has been instrumental in training and supporting me to become an effective patient advocate for my granddaughter and all the rare disease community in Texas. Through NORD and the Rare Action Network, we have successfully helped get key legislation passed in Texas, for example a Step Therapy Drug bill, Newborn Screening Expansion bills and Medicaid reform bills. I highly recommend becoming involved with this terrific organization!

2 Lisa M.12

Professional with expertise in this field

Rating: 5

NORD provides so much to people in so many areas. They provide so much real world educational information to patients, providers, and caregivers through their webinars, rare disease information, etc. They also provide excellent financial support programs for patients and even recently added a program for caregiver respite - a rarity in the field. It's a pleasure to work with their staff on projects, as they're passionate about the cause. I have worked with NORD long term and they've always been a wonderful resource to me on my journey as a rare disease patient.

1

Donor

Rating: 5

Brittany Hoffman at NORD has been a true pleasure to work with! We are annual donors and i have worked with her at least the last two years. When my great granddaughter was diagnosed with IS, i found Brittany on the other end of the line walking through the website with me as we read about what to expect. Everyone at NORD really cares about us families and we know we always have a place to turn.

1

Volunteer

Rating: 5

I participated in this year's Boston Marathon with NORD's Running for Rare program - and WOW was I BLOWN away! I learned so much about this organization and what they mean to the rare disease community. The Running for Rare program was an incredible way to partner with a rare disease patient and establish a relationship that is life-long. Well done NORD!!!

1

General Member of the Public

Rating: 5

My nephew was born with a rare disease that has the ability to be detrimental to his quality of life as he gets older. NORD has been an unbelievable resource from everything to their Rare Disease Database, patient assistance programs and conferences. Without NORD, we'd be left feeling alone and a lot less educated.

2

Client Served

Rating: 5

Anyone seeking assistance or advise about anything rare disease related should look no further!! NORD is the place to go!

1

General Member of the Public

Rating: 5

I participated in NORD's Running for Rare program as a volunteer and community partner. From the beginning of the application process to the day of the race, Brittany was not only incredibly responsive, but she managed to check in on me and my partner daily. It is obvious that the partner and runner relationship is the most important to her. After getting involved with Running for Rare I needed some advise and assistance with my child's medication. I reached out to Brittany who connected me with people in the Danbury office who were so helpful guiding me through the application process. From NORD's volunteer programs to their patient assistance programs, this company gets a gold star for all they do for people.

Donor

Rating: 5

I was able to run the Boston Marathon on behalf of NORD in 2018 and from star to finish it was a great experience. The NORD team made the race logistics easy and were also very supportive throughout. Building a relationship with a patient partner was the best aspect of raising money and running for NORD.

1

Donor

Rating: 1

I had the honor of joining the 2018 boston marathon as a member of the NORD team. My daughter was diagnosed with Kawasaki disease decades ago so diagnosis of rare diseases has a special place in my life.

I had the chance to meet NORD seniors and was very impressed with their professionalism and desire to help as many people as possible.

Client Served

Rating: 5

This organization is truly OUTSTANDING. Without NORD, there would be so many people with nowhere to turn. They surpassed all of our family's expectations. Kudos to all of the people at NORD and THANK YOU for what you do for everyone living with a rare disease!

2 Blake C.1

Volunteer

Rating: 5

I am honored and blessed to be associated with a great organization. I had the privilege to represent this organization in 2018 at the Boston Marathon. The community partners and everyone involved were simply amazing. I had a chance to tell my journey and talk about my community partner Tessa Booth the night before the race and also hear the stories from other runners and those who benefit from this organization. Xo from Canada

2

Client Served

Rating: 5

I have a family member with a rare disease and turned to NORD for assistance. From the time I called the front desk to when I was transferred to their patient services department, I was treated with nothing but kindness. NORD has been a lifesaver in helping me understand this rare disease. Their website and rare disease reports are an incredible resource to those that are newly diagnosed and trying to understand their disease. Thank you NORD!

1

Volunteer

Rating: 5

I was a volunteer at one of the NORD Running for Rare events and I cannot say enough great things about this organization! They all work so hard for the rare disease community, not only providing patients with support and assistance, but also in their advocacy work. They never stop! I highly recommend this organization to anyone in need of support OR even if you're just looking for an ear. They really are the only place to turn.

General Member of the Public

Rating: 5

NORD is an incredible resource for patients, students, researchers, industry, and medical professionals. It is really your one stop shop and the staff there is so friendly and helpful!