Become a Rare Disease Day Partner

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 rarediseaseday@rarediseases.org. Read more.

List of Partners to date

Michigan Governor Issues RDD Proclamation

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