Abstract

Advocacy organizations for genetic diseases are increasingly becoming involved in biomedical research, particularly translational research, in order to meet the needs of the individuals that they serve. PXE International, an advocacy organization for the disease pseudoxanthoma elasticum, provides an example of how research can be accelerated by these groups. It has adopted methods that were pioneered by other advocacy organizations, and has integrated these along with new approaches into franchizable elements. The model has been followed for other conditions and has led to the establishment of a common infrastructure to enable advocacy groups to initiate, conduct and accelerate research.

Author affiliations

1. Sharon F. Terry is at Genetic Alliance, PXE International and Genetic Alliance BioBank, 4301 Connecticut Avenue, NW, Suite 404, Washington DC 20008.
2. Patrick F. Terry is at PXE International and Genetic Alliance BioBank.
3. Katherine A. Rauen is at the University of California San Francisco Comprehensive Cancer Center, 2340 Sutter Street, Room S429, Box 0128, San Francisco, California 94115, USA.
4. Jouni Uitto is at Jefferson Medical College, 233 South 10th Street, Philadelphia, Pennsylvania 19107, USA.
5. Lionel Bercovitch is at PXE International and Brown Medical School, Box 1928, Providence, Rhode Island 02912, USA.

Correspondence to: Sharon F. Terry¹ Email: sterry@geneticalliance.org

MORE ARTICLES LIKE THIS

These links to content published by NPG are automatically generated.