Because cystinosis is so rare, many people do not know much about it. Often, it is difficult to diagnose or is misdiagnosed as diabetes because of its effect on the kidneys. Many parents begin their search online but struggle to find much information about this disease. Our goal is to offer education and resources, as well as support and understanding.
What we are seeking:
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Unlike other diseases that affect a great number of people, cystinosis research is funded entirely by donations from the grassroots efforts of foundations like ours. We are able to fund research into potential cures because of donations from people like you.
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Cystinosis is mostly unknown to the public. We strive to inform and educate people about this terrible illness. We hope that through the combined efforts of people like you, we can help to understand and ultimately overcome cystinosis.
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Cystinosis is a rare, incurable metabolic disease that afflicts 500 children and young adults in the United States and 2000 worldwide. As the disease progresses, the amino acid, cystine, accumulates and crystallizes in the cells due to abnormal transport. This build up eventually does great harm to the body especially the kidneys, liver and eyes.
Our organization, the Cystinosis Foundation of New Jersey, exists to fund medical research directly related to curing, treating and alleviating symptoms for those diagnosed with Cystinosis. We are a 501(c) non-profit organization located in New Jersey. For more than 30 years, the Cystinosis Foundation of New Jersey has devoted its energy to passionately advocating for increased research and awareness about this rare disease.