This morning, the National Organization for Rare Disorders (NORD) announced that it will commemorate the 35th
anniversaries of both its formation and the creation of the Orphan Drug Act with a year-long commemoration and the renewal of the national commitment to medical research and programs to advance health care for the 30-million Americans with a rare disease.
After an ad hoc coalition of parents and children with rare diseases collaborated with Congress and pharmaceutical companies, the Orphan Drug Act was signed into law by President Ronald Reagan on May 4, 1983. Exactly 4 months later, a coalition of patient advocates formally established NORD as a nonprofit organization to provide education, research and services to the patients and families affected by rare diseases.
"The advances in diagnosis, treatments and care for patients with rare diseases have been remarkable, but we still have many challenges ahead of us," said Peter L. Saltonstall, President and CEO of NORD in a press release
. "The Orphan Drug Act and the creation of NORD brought national attention to rare diseases. The joint anniversaries are an appropriate time for us to recognize the progress made and rededicate ourselves to the needs of the patient community."
As part of NORD’s year-long observance of these important anniversaries, a special section on the organization’s website will be launched and feature information and stories about milestones and achievements from the rare disease community. On Rare Disease Day (Feb. 28), NORD will offer an array of special activities to honor its history.
"The Orphan Drug Act is just as important today as it was in 1983,” said Saltonstall. “This is particularly pertinent since scientific and medical momentum is spurring the development of innovative, safe, and effective treatments for children and adults with very challenging medical conditions. This year, we will be saluting the progress made to date, we will also be focusing on the fact that much remains to be done."
In the 15 years before the Orphan Drug Act was signed into legislation, only 34 drugs approved by the U.S. Food and Drug Administration (FDA) were intended for rare diseases, and only 10 of the products brought to market by the pharmaceutical industry would have qualified under today’s Orphan Drug Act as orphan drugs. Since then, however, thousands of potential treatments have entered the research pipeline as orphan products, and more than 6000 have been approved by the FDA.
NORD will host its annual Rare Impact Awards ceremony on May 17th
in Washington D.C., an event that will focus heavily on celebrating the anniversary by highlighting nearly four decades of work for the rare disease community.
For more from the rare disease community, follow Rare Disease Report