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National Organization for Rare Disorders: NORD - out of the darkness, into the light.

The National Organization for Rare Disorders (NORD), a non-profit organization serving 20 million Americans with rare diseases, provides an information database for knowledge on rare diseases. Many people diagnosed with a rare disorder need readily understandable information as well as support. NORD makes available an information database as well the proper support group each individual can contact. They have also made available a networking system in which one individual can contact another diagnosed with the same rare disease.

According to their mission statement: "The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare `orphan' diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service."


In the late 1970s, different groups of voluntary health agencies for rare diseases realized they were all trying to reach the same goal: to raise money to find a cure for various rare diseases. Although treatments were discovered, these "cures" (sometimes called orphan drugs) were not produced because the pharmaceutical companies saw them as unmarketable. As a result, the rare disease volunteer agencies decided to join and advocate for the Orphan Drug Act. In 1983 the law was passed. The Orphan Drug Act of 1983 "provides financial incentives that have motivated pharmaceutical manufacturers to develop new treatments for rare disorders."

During the three years these agencies lobbied for this law, they were inundated with phone calls from individuals needing information and support regarding rare diseases. As a result, the agencies made the decision to formally align themselves, and NORD was born. This organization grew rapidly over the years as they realized the need to create material regarding education, rehabilitation, and medical expenses. According to the President of NORD, Abbey Meyers, "We felt there was more that needed to be done on behalf of all rare diseases." A host of volunteers answered the call.

Throughout the years as things evolved and the needs changed, NORD grew. For example, Meyers states, "There was a growing number of rare disease patients who lost their insurance. We got pharmaceutical companies to provide free drugs to people who could not afford them."

Due to all the hard work and dedication of many volunteers NORD reached its current status. Presently NORD deals with 1,000,000 inquires each year and recently they have placed their information data base on the internet.

What the future holds

The financial support NORD needs to continue is crucial. Meyers explains, "So much depends on donations and whether you will have support." Their greatest hope for the future, Meyers states, is simply, "to keep the programs going." This is especially so with recently-created new programs. NORD developed such a program entitled the "Medical Equipment Exchange Program." Meyers explains, "We hear from people who have equipment that they no longer need. We are unable to store it so we created a program which links buyers to sellers." They have installed a searchable data base on the internet to bring these people together.

Meyers feels it is very important for NORD "to continue to identify needs and find solutions." The more broad-based needs they can find, the more people NORD can assist at once.

This year NORD is celebrating its 15th anniversary. In honor of this important occasion, they will hold a banquet in Washington, D.C. with honorees from Congress and the pharmaceutical industry. Dr. Stephen Groft, Director of the Rare Disease Office at the National Institutes of Health, is one of the individuals NORD will be honoring. Dr. Groft comments, "NORD's emphasis on providing information to the rare disease community has provided a substantial amount of information to be utilized in the decisions of how to deal with a rare disorder. NORD is the necessary link between patients and the voluntary health organizations as well as the research community."

NORD would like to commend and recognize the hard work done by scientists, companies, organizations, and the government in an effort to keep this partnership going. Meyers says, "In a sense we continue to monitor the Orphan Drug Act, the progress that is made, and the obstacles that need to be removed." It is quite clear that NORD will continue to fight obstacles as they have done successfully for the last 15 years.

As I reflect on my first contact with NORD, I realize that this was a time of great inspiration, and the beginning of many positive changes in my life. My daughter, Brielle, was diagnosed in 1996 with a rare metabolic disease called mitochondrial myopathy. After being given the diagnosis, I wanted to learn all that I could about the condition, as well as raise awareness, and help other parents going through similar experiences.

When I expressed an interest in starting a foundation, Dr. Jess Thoene, Brielle's physician, and then Chairman of the Board of NORD, encouraged me to call NORD's Associate Director of Development, Jean Campbell, Jean, like everyone at NORD, was both sensitive and compassionate, as well as practical and fully versed in offering me advice on starting a non-profit organization.

In September of 1996, I attended my first NORD conference in Dallas, Texas. There I met with other parents and organizational leaders, as the NORD staff and other experts held workshops on how to successfully run a non-profit organization.

At this conference, the NORD staff introduced me to Joe Valenzano, the President, CEO, and Publisher of EXCEPTIONAL PARENT magazine. Joe expressed an interest in covering mitochondrial disorders in the magazine. He then recruited my assistance in organizing a panel of physicians and parents to help write and review a three-part series on mitochondrial and metabolic diseases.

Joe then offered me the opportunity to move to New Jersey to accept an editorial position with the magazine. At the same time I was in the midst of a difficult divorce in Michigan, but I felt the move would be good for me. Meanwhile, my friends at NORD called to check in on me and offered their emotional support during my time of need.

It was a new life for me, I was scared and excited, but knowing NORD was there for me personally as well as professionally was a great comfort. One of my first assignments at EP was to coordinate with Jean Campbell the editorial aspects of our joint NORD/EP conference last October in Arlington, Virginia. It was emotional for me as I put on my mitochondrial disorders. Only a year earlier, he had guided me to this wonderful organization of support and friendship.

Thank you NORD for leading my life in a new direction! Happy 15th Anniversary!

Julie Venners Hacker Managing Editor EXCEPTIONAL PARENT magazine

For more information on The National Organization for Rare Disorders (NORD), please call (203) 746-6518 or fax (302) 746-6481. NORD is located at P.O. Box 8923, New Fairfield, CT 06812.
COPYRIGHT 1998 EP Global Communications, Inc.
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Copyright 1998 Gale, Cengage Learning. All rights reserved.

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Title Annotation:Organizational Spotlight
Author:D'Ambra Stephanie
Publication:The Exceptional Parent
Date:May 1, 1998
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