Leading Cystinosis Researchers to Meet at Fourth International Symposium on Rare Disease

IRVINE, Calif.--()--The Cystinosis Research Foundation’s fourth International Cystinosis Research Symposium for research scientists will be held March 6-7 at the Arnold and Mabel Beckman Center of the National Academies of Sciences and Engineering, adjacent to the University of California at Irvine.

More than 50 recognized cystinosis researchers and scientists from North America and Europe, whose work is funded by the Cystinosis Research Foundation, are expected to attend the CRF-hosted symposium. The symposium’s goal is to promote collaborations among researchers in an effort to find better treatments and a cure for cystinosis, the rare and fatal disease that afflicts an estimated 500 people, mostly children, in the United States and 2,000 worldwide.

Anna Maria Cuervo, M.D., Ph.D. and faculty member of the Albert Einstein College of Medicine in New York City, will be the keynote speaker. Dr. Cuervo is known as a leader in the field of autophagy and as an expert in the molecular biology of aging. She is co-director of the Einstein Institute for Aging Research and a member of the Einstein Liver Research Center and Cancer Center. Dr. Cuervo started her laboratory at Einstein in 2001, studying the role of protein-degradation in aging and age-related disorders with emphasis in neurodegeneration. She is co-editor in chief Aging Cell and associate editor of Autophagy and has served on advisory and study panels of the National Institutes of Health.

Cystinosis is a metabolic disease that slowly destroys every organ in the body, including the liver, kidneys, eyes, muscles, thyroid and brain. In patients with cystinosis, the amino acid cystine accumulates in the tissue due to the inability of the body to transport cystine out of the cell. This causes development of crystals, resulting in early cell death. There is a drug, Cystagon ™, that can prolong the patient’s life, but there is no cure. Currently, the average life expectancy is 27 years.

In the last 11 years the CRF has funded 114 studies and fellowships totaling over $18 million in research grants. The CRF is the leading private fund provider of grants for cystinosis research in the world.

Co-chairs of the symposium are pre-eminent cystinosis researchers Corinne Antignac, M.D., Ph.D., Stéphanie Cherqui, Ph.D., Julie Ingelfinger, M.D., Ph.D., and Elena Levtchenko, M.D., Ph.D.

The Cystinosis Research Foundation is dedicated to finding better treatments to improve the quality of life for those with cystinosis and to finding a cure for this devastating disease. The CRF raises funds to support bench, clinical and translational research that is focused on improved treatments and a cure for cystinosis. The CRF also seeks to educate the medical and public communities about cystinosis to ensure early diagnosis and proper treatment.

For more information, call the Cystinosis Research Foundation at 949-223-7610 or visit www.cystinosisresarch.org.

Contacts

Cystinosis Research Foundation
Zoe Solsby
949-223-7610
or
Art Barrett
714-602-6021

Release Summary

The Cystinosis Research Foundation's fourth International Cystinosis Research Symposium for research scientists will be held March 6-7 at the Arnold and Mabel Beckman Center.

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Contacts

Cystinosis Research Foundation
Zoe Solsby
949-223-7610
or
Art Barrett
714-602-6021