Rare Disease Center Awarded $100,000
KGI's Center for Rare Disease Therapies has received a $100,000 grant from the Kenneth T. and Eileen L. Norris Foundation to continue its mission of encouraging the development of more drug therapies for patients with rare diseases.
The Norris Foundation, which supports programs that advance better health and intellectual enlightenment through education, is a generous and long-time supporter of KGI, providing $2.78 million in grants to the institute since it was founded in 1997.
"We're extremely grateful to the Norris foundation for their generosity," said Ian Phillips, PhD, the Norris Professor of Applied Life Sciences and director of the Center for Rare Disease Therapies. "It will help us advance on so many fronts. The Norris Foundation's support of high quality universities reflects the importance of this award and it increases our national standing."
Phillips said the grant will be used to fund:
- Internships for KGI students in Washington, DC, at the U.S. Food and Drug Administration and PhRMA, the Pharmaceutical Research and Manufacturers of America;
- Conferences and workshops such as the series of FDA workshops KGI has hosted for students and industry to write FDA orphan drug designation applications;
- Interaction with other groups including patient advocates like NORD (National Organization of Rare Disorders) and companies like Sigma Tau Pharmaceuticals, which specializes in rare disease therapies and has been very helpful to the center;
- Writing and publishing position papers on proposals that have an impact on the center and its work; and
- Helping research developing rare-disease therapies.
Rare diseases affect nearly 25 million Americans, or 1 out of 10. No treatment is available for most of the 7,000 identified rare diseases, and for those that can be treated the cost to the patient is often prohibitive.
Since the center was established in 2008, Phillips said it has received $567,000 from donors, including the Norris Foundation, PhRMA and Sigma Taus. The center also raised funds at its FDA industry workshop in February 2010."Without these awards, gifts and donations, we wouldn't be able to accomplish the good work in education and health that we are doing," said Phillips.