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Science and society

Advocacy groups as research organizations: the PXE International example

Nature Reviews Genetics volume 8, pages 157–164 (2007)Cite this article

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.

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Figure 1: The PXE International strategy.

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Acknowledgements

The authors are grateful to their colleagues for their hard work and dedication to advocacy. We acknowledge the thoughtful contributions of L. Djurdjinovic, B. Conger and C. Driscoll. We thank Genetic Alliance for support for these advocacy organizations to increase their capacity. Most of all we thank the men, women and children who live with genetic conditions for their fortitude and passion for making a difference.

Author information

Authors and Affiliations

  1. Sharon F. Terry is at Genetic Alliance, PXE International and Genetic Alliance BioBank, 4301 Connecticut Avenue, NW, Suite 404, Washington DC 20008.,

    Sharon F. Terry

  2. Patrick F. Terry is at PXE International and Genetic Alliance BioBank.,

    Patrick F. Terry

  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.,

    Katherine A. Rauen

  4. Jouni Uitto is at Jefferson Medical College, 233 South 10th Street, Philadelphia, Pennsylvania 19107, USA.,

    Jouni Uitto

  5. Lionel Bercovitch is at PXE International and Brown Medical School, Box 1928, Providence, Rhode Island 02912, USA.,

    Lionel G. Bercovitch

Authors
  1. Sharon F. Terry
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  2. Patrick F. Terry
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  3. Katherine A. Rauen
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  4. Jouni Uitto
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  5. Lionel G. Bercovitch
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Corresponding author

Correspondence to Sharon F. Terry.

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Competing interests

The authors declare no competing financial interests.

Related links

Related links

DATABASES

OMIM

ataxia telangiectasia

cardiofaciocutaneous syndrome

Costello syndrome

cystic fibrosis

Huntington disease

Hutchinson–Gilford progeria

pseudoxanthoma elasticum

FURTHER INFORMATION

Aneurysm Outreach

Angioma Alliance

AT Children's Project

CFC International

Chromosome 18 Registry and Research Society

Cystic Fibrosis Foundation

Genetic Alliance

Genetic Alliance BioBank

Hereditary Disease Foundation

Inflammatory Breast Cancer Research Foundation

Joubert Syndrome Foundation

National Alopecia Areata Foundation

National Psoriasis Foundation

NBIA Disorders Association

Progeria Research Foundation

PXE International

Tay Sachs and Allied Diseases Foundation

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Terry, S., Terry, P., Rauen, K. et al. Advocacy groups as research organizations: the PXE International example. Nat Rev Genet 8, 157–164 (2007). https://doi.org/10.1038/nrg1991

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