News Briefs

The National Organization
for Rare Disorders (NORD)
Names Peter L. Saltonstall
New President

Senior health care professional looks forward
to building on NORD’s 25 years of advocacy and support
for those with rare disorders

Washington, D.C. – May 5, 2008 – The National Organization for Rare Disorders (NORD) announced today that its board has unanimously selected Peter L. Saltonstall to be the organization’s new president and chief executive officer. The appointment comes as NORD celebrates its 25th anniversary and the 25th anniversary of the landmark Orphan Drug Act which provides incentives for development of therapies for people with “orphan” diseases affecting 200,000 or fewer people in this country.

Saltonstall brings NORD more than 30 years of healthcare experience in both for-profit and not-for-profit environments as well as extensive federal and commercial market knowledge. He has held senior positions within a number of major academic medical centers and organizations, including Harvard’s Brigham and Women’s Hospital, Tufts-New England Medical Center, St. Elizabeth’s Medical Center of Boston and Harvard’s Risk Management Foundation.

Devoted to improving patient safety, he was a co-founder of SafeCare Systems, LLC, which developed one of the country’s first patient safety management systems and he also played an active role on Capitol Hill in the development of the Patient Safety Act of 2005, which has dramatically improved the reporting of events that adversely affect patients.

Through his career, he has developed a broad understanding of complex healthcare issues and remains committed to improving the health care system to benefit patients.

“We have accomplished much over the past 25 years but there is still a lot of work to do,” said Abbey Meyers, the founder of NORD, who retired as its president this month. “Peter’s extensive experience working with a variety of different stakeholders on complex issues will be a great asset to NORD in advancing the cause of the millions of Americans who suffer from rare disorders.”

After being notified of his selection by the Board of Directors following a nationwide search, Saltonstall talked about his admiration for NORD’s work, his personal experience with rare disorders and his hopes for the future. “I am honored to take on this responsibility and excited about the opportunities to further strengthen the crucial support NORD provides to patients and families affected by rare disorders,” said Saltonstall.

“The Board has every confidence that Peter’s leadership skills, and his extensive health systems, development and policy experience will take NORD forward,” said Dr. Carolyn Asbury, Chair of the NORD Board of Directors. “Those skills, combined with Peter’s personal understanding of the issues faced by the 25 million people affected by rare diseases, have prepared him to build on NORD’s accomplishments and affect the challenges ahead.”

Saltonstall lives in the metropolitan Washington, D.C., area and has one son who, with his wife and two sons, lives in northern California.

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About NORD

The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them.

A rare or “orphan” disease affects fewer than 200,000 people in the United States. There are more than 6,000 rare disorders that, taken together, affect approximately 25 million Americans. For twenty-five years, NORD has served as the primary non-governmental clearinghouse for information on rare disorders. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. (www.rarediseases.org)

NORD to Celebrate 25th Anniversary
of the Orphan Drug Act

Danbury, Connecticut—The National Organization for Rare Disorders (NORD) and rare-disease patient organizations across the United States are celebrating the 25th anniversary of the signing of the Orphan Drug Act (ODA) during 2008. This groundbreaking legislation brought real hope to the more than 25 million Americans living with one of the nearly 7,000 diseases considered to be rare.

In the decade before the Orphan Drug Act was passed by Congress and signed by President Ronald Reagan, only 10 treatments had been developed for rare diseases by the pharmaceutical industry. In the 25 years since then, more than 1,100 treatments for rare diseases have entered the research pipeline and more than 300 have been approved by the U.S. Food and Drug Administration for marketing. In addition, the Act has proven to be a potent catalyst to the growth of the pharmaceutical and biotechnology industries in the United States.

A rare or “orphan” disease is defined by the U.S. Food and Drug Administration (FDA) as a disease or condition that affects fewer than 200,000 Americans. In the past, these diseases of low prevalence were overlooked by drug and medical device developers. The Orphan Drug Act provides financial incentives that help companies recover the cost of developing a drug for small patient populations.

During 2008, NORD and its members, along with the National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA), and the pharmaceutical and biotechnology industry organizations, will be celebrating the 25th anniversary of both the Orphan Drug Act and of the founding of NORD. Special events planned for the year include the following:

• A 25th Anniversary Gala hosted by NORD at Union Station in Washington, DC, on May 20, 2008
• An international scientific conference on rare diseases hosted by the National Institutes of Health, with assistance from NORD, during the same week as the NORD Gala
• A special 25th Anniversary NORD Annual Conference in the fall of 2008

Information about these special events, and other news related to rare diseases and the development of new treatments for them, will be posted throughout the year on NORD’s web site (www.rarediseases.org).

For information, contact:

Mary Dunkle, National Organization for Rare Disorders
(203) 744-0100, mdunkle@rarediseases.org

ICORD 2008

Global Approaches for Rare Diseases Research and Orphan Products Development

May 20-22, 2008
Washington DC, USA

The 4th International Conference on Rare Diseases and Orphan Drugs (ICORD) will take place in Washington, DC, on May 20-22, 2008. All individuals active in rare diseases and/or orphan products are invited.

Co-organizers of the program are Stephen Groft, PharmD, Director of the Office of Rare Diseases at the National Institutes of Health, and Jan-Inge Henter, MD, PhD, Professor of Pediatrics, Karolinska Institutet, Stockholm, Sweden.

The meeting will be held in conjunction with NORD’s 2008 Tribute Banquet and with a meeting of the NORD Corporate Council.

The overall aim of the ICORD 2008 meeting will be to develop constructive international collaborations from which patients will benefit. The ICORD mission is to improve the welfare of people affected by rare diseases through enhanced knowledge, research, care, information, education and awareness.

More information on this meeting is provided on the website of ICORD: www.icord.se. The themes for ICORD 2008 will be:

• Facilitating the Harmonization of the Regulatory Processes
• Linking Academic Discoveries and Industry
• Product Development Resources
• Rare Diseases Research Assessment Tools
• Clinical Trials of Rare Diseases and Orphan Products
• Genetic Testing
• Meeting Patient and Family Needs Across the Lifespan--Model Programs
• Expanding the Information and Research Borders for Rare Diseases