NORD Board Announces
New President and CEO

NORD’s board of directors has unanimously selected Peter Saltonstall to be the organization’s new president and chief executive officer. Saltonstall brings NORD more than 30 years of healthcare experience and a commitment to improving health systems to benefit patients.

More information.

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.

Read our news release.

FDA/DIA To Sponsor
Orphan Drug Act Conference

In celebration of the 25th anniversary of the Orphan Drug Act, FDA, industry and patient advocacy groups are coming together to discuss accomplishments to date and future challenges in the development of orphan products. This conference will take place on Monday, May 19, from 8 a.m. to 5 p.m. at the Capital Hilton Hotel in Washington, DC. For a schedule of events or to register, visit www.diahome.org.

ICORD Conference Set
For Week of NORD Gala

During the week of May 19th, there will be an international conference in Washington, DC for all who are active in rare diseases or orphan product development. ICORD—the International Conference on Orphan Diseases and Orphan Drugs—will take place May 20 to 22. The first day of this meeting will be held in conjunction with NORD’s Corporate Council meeting. More information.

Register for the ICORD conference.

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 Newborn Screening Saves Lives Act

Late Thursday evening, the White House announced that President Bush had signed the Newborn Screening Saves Lives Act. NORD thanks all its members and friends who wrote letters of support for this legislation.

GINA Clears Senate

On April 24, the Senate passed the Genetic Information Nondiscrimination Act (GINA). The measure now will go back to the House of Representatives, which had approved a similar measure earlier, before being sent to President Bush to be signed into law. GINA provides protections against genetic discrimination by health insurers and employers.

Genzyme Allston Team
Runs Marathon for NORD

Employees of Genzyme Corporation’s Allston Facility, where treatments for rare diseases are manufactured, ran the Boston Marathon to raise money for NORD. Their efforts resulted in donations totaling $20,000 for programs and services for patients and families affected by rare diseases.

Read about this and make a donation.

NORD Announces
2008 Funding Opportunities

Medical researchers around the world are invited to apply for clinical research grants through the NORD Research Program for 2008. The deadline for submitting abstracts and letters of intent is May 9th. Funding is available for clinical studies of the following diseases: alveolar capillary dysplasia, APECED/APS type 1, olivopontocerebellar atrophy and closely related diseases, Tarlov cysts, and tyrosinemia type 1. Read the press release.

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.

Orphan Drugs for Cancer Featured

The March 2008 issue of Oncology Business Review features an article on the Orphan Drug Act and its impact on the biotechnology industry and products to treat rare cancers. Read the article.

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.

NORD Awards Research Grants, Fellowship

The National Organization for Rare Disorders (NORD) has awarded seed-money grants of approximately $30,000 each for the study of the following diseases: cat eye syndrome, hereditary tyrosinemia, Kearns Sayre syndrome, and olivopontocerebellar atrophy (OPCA) or related diseases. NORD also awarded a second-year NORD/Roscoe Brady Lysosomal Storage Diseases Fellowship. Details.

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.