The National Organization for Rare Disorders (NORD)

Database Subscriptions

Many libraries, schools, universities, and hospitals subscribe to NORD’s Rare Disease Database for unlimited access to reports on more than 1,150 diseases.

Index of Rare Diseases

This is the list of diseases currently covered in the Rare Disease Database.

Rare Disease Database

Search this database for reports on more than 1,150 diseases.

View sample report

Index of Organizations

This is the list of organizations in NORD’s Organizational Database.

Organizational Database

Read about more than 2,000 patient organizations and other sources of help.

U.S. Food and Drug Administration (FDA)

List of Orphan Product Designations and Approvals

Experiences of the Rare Disorder Community

In 1989, a Congressional committee released a report on the ways in which having a rare disease affects patients and their families. Now, NORD and a Sarah Lawrence College graduate student have conducted a similar, but smaller, study to update the findings. Read the full text of the report.

NORD Member Organization Events and Requests for Proposals

NORD’s Member Organizations host many conferences and scientific meetings. Read about important upcoming events on the Member Organization Events page and Member Organization RFPs page.

NORD Nonprofit Resource Center

Helpful advice for establishing and growing a patient organization

Read About NORD’s Patient Assistance Programs

NORD administers various programs to help people obtain certain medications. These include medication assistance programs for uninsured patients, Medicare and insurance co-pay programs, early or expanded access to investigational products, travel and relocation assistance for clinical trial participants, and emergency or limited access to products in short supply. Click here to read about the patient assistance programs currently being administered by NORD.

NORD Gets 4-Star Rating for Sound Fiscal Management

sound fiscal management

For the sixth consecutive year, NORD has been awarded the top (4-Star) rating for sound fiscal management by Charity Navigator, a leading evaluator of charities. Less than four cents of every dollar donated to NORD goes to administrative and fundraising costs. Details.

NORD supports National Family Caregivers Month.

Become a Rare Disease Day Partner

Rare Disease Day NORD is coordinating the observance of Rare Disease Day in the U.S. on February 28, 2009. On that day, and the weeks leading up to it, we will join with others around the world to conduct a variety of activities to raise awareness of rare diseases and the need for safe, effective treatments. We invite all patient organizations, companies, medical societies, and others with an interest in rare diseases and orphan products to join us in this global effort. For information on becoming a Rare Disease Day partner, write to Read more.

List of Partners to date

Michigan Governor Issues RDD Proclamation

Stephanie Hunt Governor Jennifer Granholm of Michigan has proclaimed that February 28, 2009, will be Rare Disease Day in that state. Her proclamation was issued in response to a request by Stephanie Hunt, a NORD member who also represents the Rubinstein-Taybi Support Group. Stephanie, a former Mrs. Michigan, went on to become Mrs. United States for 2007. If you would like to write to your governor about Rare Disease Day, click here for a sample letter and proclamation..

Other Proclamations
As of today, NORD has received proclamations from the governors of Connecticut, Kentucky, Montana and Nebraska, in addition to Michigan, related to Rare Disease Day. View map and Proclamations.

Chinese Organization Supports Rare Disease Day

The Chinese Rare Disease Organization has signed on as a Rare Disease Day Partner and is planning an activity at a Chinese medical university on or around February 28. This photo was taken during the 11th Annual Asia LSD (Lysosomal Storage Diseases) Symposium in Beijing in October. Pictured are Serena Wu (left) of the Taiwan Foundation for Rare Diseases, a NORD Member Organization, and Zhang Yafei, of mainland China.

Neurodegenerative Diseases to be Topic of Conference

The 3rd Drug Discovery for Neurodegeneration conference will take place on Feb. 2-3 in Washington, DC. Speakers will present lectures and case studies on Alzheimer's disease, Parkinson's disease, ALS, Huntington's disease, multiple sclerosis, and other neurologic diseases. The meeting is sponsored by the Alzheimer's Drug Discovery Foundation, NIH Office of Rare Diseases, Naitonal Institute on Aging, and National Institute of Neurological Disorders and Stroke. Details.

Save the Date: NORD Gala & Summit to be May 14

The 2009 NORD Gala will take place at the National Press Club in Washington, DC, on Thursday evening, May 14. On the same day, NORD will host a major gathering of thought-leaders from government, industry, and the scientific community at a Partners In Progress summit to identify the key challenges facing the rare disease community and develop a priority agenda. Watch this site for details on both events.

FDA Seeks Nominations for Oncologic Drugs Advisory Committee

The Food and Drug Administration is seeking nominations for members to serve on the Oncologic Drugs Advisory Committee (ODAC) in the Center for Drug Evaluation and Research (CDER). The terms for new members will begin July 1, 2009. Nominations must be received by February 27, 2009. Nominees may include both medical professionals and patient advocates. Details.

NORD Announces Clinical Grant Awards for 2008

NORD is happy to announce the awarding of seven research grants for the year 2008. Funding for several of these grants was made possible by patient organizations. Read More

NORD Gets Top Rating from Charity Navigator

For the sixth consecutive year, NORD has been awarded the top (4-Star) rating for sound fiscal management by Charity Navigator, a leading evaluator of charities. Only 2 percent of the charities ranked by Charity Navigator achieve the 4-Star rating six or more consecutive times. Details

New IRS Form: Deciding What's Right for Your Organization

The IRS Form 990, which must be filed by most nonprofit organizations, has been redesigned. Jackie Henson, an attorney in private practice in Washington, DC, with expertise in nonprofit law, has written an article for NORD and its members about the changes and considerations to keep in mind as the forms are filed this year. Ms. Henson has spoken about legal matters involving nonprofit organizations and good governance practices at several NORD conferences over the years.. Details

FDA Approves New Drug for Lennox-Gastaut Seizures

The U.S. Food and Drug Administration has approved a new drug, Banzel (rufinamide), for use as an add-on (adjunctive) treatment for seizures associated with Lennox-Gastaut syndrome. This is a severe form of epilepsy that usually begins before four years of age, and can be caused by brain malformations, severe head injury, central nervous system infection, and inherited degenerative or metabolic conditions. Affected children may have periods of frequent seizures mixed with brief, relatively seizure-free periods.

NIH Launches "Children and Clinical Studies" Web Site

As it becomes more widely acknowledged that children are not just "little adults", the National Institutes of Health (NIH) has launched a new Web site to focus on medical research involving children. Parents and healthcare providers may find helpful information on this site. Read more.

Social Security Announces Launch of Compassionate Allowances

October 27, 2008 NORD President Peter Saltonstall called the Social Security Administration's new Compassionate Allowances initiative, unveiled today, "an outstanding achievement" that will greatly benefit people with certain rare diseases. He said the new initiative is a first step and that NORD looks forward to working with SSA on extending the initiative to additional rare diseases. Read more. View SSA News Release. Read Our Press Release.

FDA Approves Drug to Prevent Angioedema Attacks

Oct. 10, 2008 The Food and Drug Administration has approved Cinryze, a C1 inhibitor therapy, for routine prevention of attacks of spontaneous swelling (angioedema) in adolescents and adults with the rare disease known as hereditary angioedema (HAE). This is the first drug approved for this purpose in the U.S. HAE, also known as C1 inhibitor deficiency, causes sudden, unpredictable, and sometimes life-threatening swelling in the extremities, face, respiratory system, and other parts of the body. Cinryze is a a product of Lev Pharmaceuticals, Inc.

View NORD's 25th Anniversary Gala video

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Help NORD improve the lives of people with rare diseases.

Make an online donation in honor or memory of a friend or loved one.

Who We Are

NORD is a unique federation of individuals and organizations working together to build a better world for people affected by rare diseases. Read about NORD.

NORD Member Organizations

NORD Board of Directors

NORD Medical Advisory Committee

NORD Corporate Council

Our Online Community

Visit the Community

NORD has partnered with Inspire to create a free, unique online community service for rare-disease patients, their families, and caregivers. It will be a place where people can find and support one another, share stories, and build a network of online friends.

Please Help US Raise Awareness

Please Help Us Raise Awareness

Do you have a newsletter, community bulletin board, or other place where this ad might be placed to raise awareness of rare diseases and to encourage support for NORD's programs and services? If so, please write to Mary Dunkle ( or call her at (203) 744-0100 and she will send a copy to you.

NORD's Washington Office

Read about NORD's advocacy on current issues, and learn how you can become involved. Click for details

Looking for Help?

You can contact NORD's Nurse or Genetic Counselor with questions or concerns. Call (800) 999-NORD or write to or Genetic_Counselor


Quick facts, FAQs, and other information for members of the press. Click for details.

Travel Assistance

For information on charitable, long-distance, medical air transportation, visit the National Patient Travel Center's Web site or call their Helpline at 1-800-296-1217.

What's new?

Read about new drug approvals and other recent developments on NORD’s News Briefs page.

Free Booklets for Physicians

NORD provides free booklets on rare diseases to physicians and other medical specialists. (Go to story)

Medical Assistance Programs

NORD’s Medication Assistance Programs provide specific prescription drugs to people who cannot afford them. (Go to Article)

NORD is a participant in the Combined Federal Campaign: #11992 in the CFC brochure.

©2008 NORD - National Organization for Rare Disorders, Inc. All rights reserved.

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