NORD's
Washington Office
Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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Individuals, Companies Honored at NORD Tribute Banquet
View photos from the 2005 Tribute Banquet
NORD honored four individuals and three companies for their achievements toward
reducing the suffering of people with rare diseases at its 22nd annual Tribute
Banquet on May 23. The individuals honored were:
- U.S. Senator Jeff Bingaman (D-NM), who was cited for introducing legislation
to eliminate the two-year waiting period between when a disabled person qualifies
for Social Security Disability Insurance (SSDI) and when he or she can receive
Medicare benefits;
- Professor Josep Torrent-Farnell, MD, PhD, PharmD, chairperson of the European
Union's Committee on Orphan Medicinal Products (COMP), for his achievements
on behalf of people with rare disorders throughout Europe;
- Elizabeth Dickinson, associate chief counsel of the U.S. Food and Drug Administration
(FDA), for her dedication and commitment to the FDA's orphan products program;
and
- Robert M. Campbell, Jr., MD, for the development of the vertical, expandable,
prosthetic titanium rib (VEPTR) for children who have a condition known as
thoracic insufficiency syndrome that occurs as a result of malformations of
the chest, spine and ribs. The titanium rib is credited with saving the lives
of infants who otherwise would have died because of insufficient room in the
chest cavity for their lungs to grow.
The companies honored were:
- Bausch & Lomb of Rochester, N.Y., a global company dedicated to protecting
and preserving vision, for the development of Retisert for the treatment of
chronic non-infectious uveitis. This sight-threatening inflammatory disease
primarily affects people between the ages of 20 and 50. Retisert represents
a unique drug delivery technology in that it consists of a tiny drug reservoir
that delivers an anti-inflammatory drug directly to the back of the eye over
a period of approximately 30 months.
- Pharmion Corporation of Boulder, Co., a global pharmaceutical company focused
on hematology and oncology; Pharmion was honored for the development of the
orphan drug Vidaza (azacitidine for injectable suspension) for a group of
rare blood disorders known as myelodysplastic syndromes. Vadaza is the first
FDA-approved drug specifically for these syndromes, which occur when blood
cells fail to develop properly in the bone marrow.
- Synthes Spine Company of West Chester, Pa., a global medical device company
that develops, produces, and markets instruments, implants, and biomaterials
to correct and repair the human skeleton and its soft tissues. Synthes was
honored for manufacturing and distributing the titanium rib developed by Dr.
Campbell, who began his research many years ago with a small grant from NORD.
The titanium rib, which has been 17 years in development, was approved in
September 2004 by FDA. It makes it possible for children born with this life-threatening
deformity to lead normal lives in many cases.
Each year, NORD selects individuals and companies to honor in gratitude for
their activities on behalf of people with rare diseases. In many cases, those
being honored have developed products to treat serious diseases for which no
other treatment exists, knowing that their return on investment will be modest
at best.
NORD's annual Tribute Banquet is an occasion on which several hundred
guests representing government agencies, pharmaceutical and biotech companies,
researchers, medical professionals, and members of patient organizations join
together to honor individuals and companies for outstanding achievement.
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Since 1983, working toward the prevention, treatment, and cure of rare
“orphan” diseases.
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In light of the current concern about bioterrorism, NORD is offering full-text versions of four disease reports - Anthrax, Smallpox, Botulism and Bubonic Plague - free of charge. Click here for your free copies.
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NORD Resource Guide
The new and expanded NORD Resource Guide
(5th edition) is now available. It lists more than 1,300 organizations helping
people with rare disorders.
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Medical Assistance Programs
NORD’s Medication Assistance Programs provide specific prescription drugs to people who cannot
afford them. (Go to Article)
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