Cystinosis Research Network

Dedicated to a Cure-Courage in the Face of Adversity

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.


The Balancing Act


Cystinosis Research Network

Dedicated to a Cure-Courage in the Face of Adversity

Cystinosis is a rare, genetic metabolic disease that causes the amino acid cystine to accumulate in various organs of the body.

Important information to know:

- Cystine crystals accumulate in every cell of the body, including the kidneys, eyes, liver, muscles, pancreas, brain, and white blood cells.

- Without specific treatment, children with Cystinosis develop end stage kidney failure by approximately age nine.

- Cystinosis also causes complications in other organs of the body. The complications include muscle wasting, difficulty swallowing, diabetes, and hypothyroidism.

- It is estimated that at least 2,000 individuals worldwide have cystinosis, though exact numbers are difficult to obtain because the disease is often undiagnosed and/ or misdiagnosed

As treatments have improved, children can now live into adulthood and experience productive lives. New treatments and research are giving hope for a bright future for children and adults with Cystinosis. Over the last 20 years, the prognosis of a child born with Cystinosis has greatly improved. Scientists have mapped the Cystinosis gene, CTNS, to chromosome 17p13.

The Cystinosis Research Network is an all-volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about Cystinosis. The vision of the Cystinosis Research Network is the discovery of improved treatments and ultimately a cure for Cystinosis.

The Cystinosis Research Network will hold its sixth biennial Family Conference in Washington, D.C. in July 2013, which provides the rare opportunity for patients, families and professionals to gather together and learn more about the disease.

“The Cystinosis Research Network is proud to partner with The Balancing Act to increase awareness about the rare, genetic disorder, Cystinosis. Children with Cystinosis are often undiagnosed, leading to devastating consequences. It is our hope that telling one family’s story may help families obtain diagnosis and treatment more quickly.”

Watch the segment on Cystinosis with Dr. Craig Langman as part of the “Behind the Mystery: Rare & Genetic Diseases” series on Lifetime TV to learn more and hear the inspiring story of one’s family’s journey with Cystinosis: http://www.thebalancingact.com/story/4525/cystinosis_research_network

Learn more at: http://www.cystinosis.org


The Balancing Act® Talks Cystinosis Awareness On Lifetime TV

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The Balancing Act® Talks Keeping Pearly Whites in Shape; Cystinosis Awareness On Lifetime TV

Acteon North America and Cystinosis Research Network Take Center Stage on The Balancing Act®

(Pompano Beach, FL – PR BUZZ – April 5, 2013) Popular morning show The Balancing Act® welcomes one of the hottest products in dental care and a rare and genetic disease resource to their show airing on Tuesday, April 9th at 7:00 a.m. (ET/PT) on Lifetime TV. Make sure to watch as hosts Danielle and Kristy help jump start the day with animated conversation and great information to balance and empower a women’s life.

Don’t miss these featured segments taking center stage on The Balancing Act:

• Keep Gums and Teeth in Good Shape with Acteon – Your active lifestyle may prevent you from visiting the dentist as often as you need to. Did you know that poor dental care not only results in tooth loss, but can affect your overall health such as leading to diabetes, heart disease and stroke? Join Julie Moran, Tim Long, VP and COO of Acteon North America and Dr. Ron Kaminer as they discuss a minimally invasive way to take control of your oral health. SOPROCARE provides the dental professional a safe tool for early detection of cavities, plague and gingivitis using fluorescence technology. To learn more, please visit: http://www.acteonusa.com or http://www.us.acteongroup.com.

• Courage in the Face of Adversity with The Cystinosis Research Network – Cystinosis is a rare, genetic disease that causes the amino acid cystine to accumulate in various organs of the body. Without specific treatment, children with cystinosis develop end stage kidney failure at approximately age nine. Join Dr. Craig Langman, a specialist in kidney diseases at Lurie Children’s Hospital in Chicago and Kacy who has the disease, with her mom, who share their struggles about searching for information. The Cystinosis Research Network is an all volunteer non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about Cystinosis. http://www.cystinosis.org
The Balancing Act® on Lifetime Television
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