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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Research
Research Grant Program
NORD's Research Grant Program provides seed money in small grants to academic scientists
studying new treatments or diagnostics for rare diseases. The clinical researchers supported
by NORD's research grants provide preliminary data indicating that a treatment (drug, device,
or medical food) may be safe and effective when used for a larger number of patients.
Researchers can then use the preliminary data to apply for larger multi-year government
grants or to attract a commercial sponsor who will manufacture an orphan product and get it
approved for marketing by the U.S. Food & Drug Administration (FDA).
Rare disease research funding opportunities
being made available through NORD.
Rare disease research funding opportunities
being made available through NORD Member-Organizations.
Read NORD's Research Program Policy to learn how NORD helps individuals,
families, groups, or organizations sponsor research.
NORD Awards Research Grants
NORD's Medical Advisory Committee has recommended, and the NORD
Board of Directors has approved, the awarding of seven research grants in November 2008. The patient
organizations that funded the grants (when applicable), investigators, their institutions, and their
projects are as follows:
Alveolar Capillary Dysplasia
(Alveolar Capillary Dysplasia Association)
Partha Sen, PhD
Baylor College of Medicine
Genotyping and VEGF188 Expression Study for Further Understanding of the
Molecular Basis and Pathophysiology of ACD
APS Type 1,(Autoimmune Polyglandular Syndrome, Type 1)
(APS Type1.Org)
Daniela Cihakova, MD, PhD
Johns Hopkins University
Chronic Candidiasis Develops in the Absence of Normal Aire Function Due to a
Defect in the Induction of IL-17 by Dendritic Cells
Matthias Wabl, PhD
University of California, San Francisco
Hypermutation as a Cause of Autoimmunity in Aire Deficiency
Olivopontocerebellar Atrophy and Related Disorders
Henry Houlden, MD, PhD
Institute of Neurology, London
The Identification and Characterization of Disease Genes and Risk Factors that
Predispose to Multiple System Atrophy (MSA)
Puneet Opal, MD, PhD
Northwestern University
Molecular Pathways Underlying SCA1 Degeneration
Tarlov Cysts
Tarlov Cyst Disease Foundation
Anne Louise Oaklander, MD, PhD
Massachusetts General Hospital/Harvard Medical School
Early Detection of Risk Factors for Tarlov Cysts and Their Complications
Tyrosinemia Type 1
Joshua's Cure.Org/Danielle Barckett Fund
Eugene Swenson, MD, PhD
Yale University School of Medicine
Bone Marrow Mesenchymal Stem Cell Transplantation for Hereditary Tyrosinemia
Type 1
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Since 1983, working toward the prevention, treatment, and cure of rare
“orphan” diseases.
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Previous Awards
2007 Research Award Announcements
2005 Research Award Announcements
2004 Research Award Announcements
2003 Research Award Announcements
2002 Research Award Announcements
Free Booklets For Physicians
NORD offers
free booklets for physicians and other medical profes- sionals. To request copies,
or learn how topics are selected, click here.
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Database Subscriptions
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universities, and hospitals, to provide access to all the information in NORD’s databases.
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