Cystinosis Research Network Featured on The Balancing Act’s Behind The Mystery: Rare and Genetic
April 9, 2013
The Cystinosis Research Network was featured on this morning’s episode of The Balancing Act.
Cystinosis is a rare, genetic metabolic disease that causes the amino acid cystine to accumulate in various organs of the body. Cystine crystals accumulate in the kidneys, eyes, liver, muscles, pancreas, brain and white blood cells. Without specific treatment, children with cystinosis develop end stage kidney failure at approximately age nine.
Behind the Mystery of: Rare and Genetic Diseases is a series produced with the intention of introducing and uniting patient, physician and scientist with research, education and the opportunity to revolutionize the way our health care system works for the rare and genetic minority.
By partnering with The Global Genes Project, The Balancing Act is able to provide available support to patients diagnosed with rare and genetic diseases, and to give hope with news of clinical trials and new treatments. Together, we can begin a new wave of advocacy and support for the rare community.
The Balancing Act supports and celebrates patient advocacy groups and industry leaders, who inspire connections and guide patients as they move forward through their journey towards treatments and cures.
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