NORD Celebrates
25 Years of Progress

More than 500 people attended a recent gala at Washington's Union Station in honor of the 25th anniversary of NORD and of the Orphan Drug Act. As a result of the Orphan Drug Act, more than 320 new drugs have been brought to market for rare diseases.

View NORD's 25th Anniversary Gala video

President Ronald Reagan signed the Orphan Drug Act in 1983, bringing new hope to the 25 million Americans with rare diseases. Throughout 2008, we’ll be celebrating the 25th anniversary of this very successful legislation and of the founding of NORD.

No Fall Conference This Year
Because of the special activities related to NORD's 25th anniversary celebration, there will be no fall conference this year.  However, watch this space for announcement of a major event in 2009.

Read our news release.

West Nile Virus

Now that summer is in full swing, several states are reporting confirmed cases of West Nile Virus. The CDC (Centers for Disease Control and Prevention) lists tips on its website for reducing your risk for this disease. Read the report on West Nile Virus from NORD's Rare Disease Database.

CDC Lists Steps to Reduce West Nile Risk

PNH Support Meetings

NORD will be hosting a series of regional support meetings for patients and families affected by paroxysmal nocturnal hemoglobinuria (PNH). Read about upcoming meetings for PNH patients and families in Chicago (July 19) and Denver (Aug 2).

NIH Launches Undiagnosed
Diseases Program

MAY 19, 2008—NORD participated in a conference call this morning hosted by the National Institutes of Health (NIH) to learn about the introduction of the new NIH Undiagnosed Diseases Program. The goals of this trans-NIH program are to provide answers to patients with mysterious conditions that have long eluded diagnosis and to advance medical knowledge about rare and common diseases. Patients must be referred to this program by a physician or other health care provider. All cases submitted for consideration will be reviewed by a multidisciplinary team of specialists and those selected for participation will be evaluated at the NIH Clinical Center in Bethesda, Maryland. There is no charge for participating in this clinical research program.

Individuals with undiagnosed conditions who are interested in this program should call the Clinical Center Patient Recruitment Call Center (1-866-444-8806). Additional Information is available from the NIH Office of Rare Diseases at http://rarediseases.info.nih.gov/undiagnosed.

New Program to Help Families
Affected by PKU

BioMarin Pharmaceutical, Inc., has awarded a grant to NORD to help families affected by phenylketonuria (PKU) purchase the specialized medical foods required for people with that rare metabolic disorder. More information.

President Signs "GINA"

President Bush has signed into law the Genetic Information Nondiscrimination Act of 2008 (GINA). The act protects Americans against discrimination based on their genetic information in matters related to employment and health insurance. It is hoped that this measure, which was debated in Congress for 13 years, will help people take full advantage of medical treatments that are increasingly personalized, without fear of discrimination.

One in a Million®

On April 21, 2008, Kristine Bostek ran the Boston Marathon for the first time in her life. She did it to raise money for research on Dubowitz syndrome, a rare disorder that affects her niece, Caitlin Granger. “Caitlin was at mile #20. It was a very emotional part of the race for me,” Kris said afterward. She raised more than $10,000 and donations continue to come in, in Caitlin's honor. Read the letter Kris wrote to her friends and family.

Read other One in a Million stories.

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

For the fifth consecutive year, NORD has been awarded a top (4-star) rating for sound fiscal management by Charity Navigator, a leading charity evaluator. The evaluation shows that NORD spent slightly over three percent of its revenues on fundraising and administration. All the rest went directly to programs and services. Details.