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Cystinosis community news

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    Long-Term Safety Follow-up Study of Cysteamine Bitartrate Delayed-release Capsules (RP103)
    News, published 20 days ago

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    This is a long-term, open-label, study to determine the safety and tolerability of twice a day treatment with Cysteamine Bitartrate Delayed-release Capsules(RP103).

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    Payin’ it forward: Racer goes online to battle Cystinosis
    News, published 23 days ago

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    On a global level, the efforts of local individuals working to help Hank already have gained notice from the Cystinosis Research Foundation — an organization that is pressing for a cure to the disease.

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    The success of this year's local Real Men Can Cook event has enabled the organizers of the fundraiser to present a cheque to the Cystinosis Research Foundation for $30,334.
    News, published 23 days ago

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    The success of this year's local Real Men Can Cook event has enabled the organizers of the fundraiser to present a cheque to the Cystinosis Research Foundation for $30,334.

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    Graduating with a diploma, new kidney
    News, published about 1 month ago

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    Dan, aided by a new kidney transplanted in January to replace the ones wracked by cystinosis, walked with 620 other seniors to receive his Liberty High School diploma in a ceremony neither he nor his parents or teachers thought he'd be able to attend.

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    Sarah’s race for life as rejection leaves her waiting for second kidney transplant
    News, published 3 months ago

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    Now, the 20-year-old, of Moorside, Sunderland, is praying for a miracle as she waits for a suitable donor. Sarah has to endure three hours of dialysis four times a week at Newcastle’s Royal Victoria Infirmary.

    At just 18 months old, the youngster was diagnosed with cystinosis, a rare genetic disease that affects just one in 200,000 people.

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    Synthesis and in vitro evaluation of novel pro-drugs for the treatment of nephropathic cystinosis.
    News, published 3 months ago

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    As part of our continuing work to obtain new pro-drugs for the treatment of nephropathic cystinosis, a number of glutaric and succinic acid derivatives of cystamine have been designed, synthesised and biologically evaluated in vitro. These compounds have been designed as odourless and tasteless...

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    Mother Donates Kidney to Save Daughter's Life
    News, published 3 months ago

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    It took doctors a while to figure it out, but at age 4, she was diagnosed with Cystinosis - a genetic disorder that affects the kidneys. She would eventually need a kidney transplant. Doctors looked for a donor in her family....

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    US Backs UK Researchers To Combat Rare Genetic Disease
    News, published 3 months ago

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    As a result of their ongoing research into improving life-saving drugs used to treat cystinosis, pharmaceutical scientists at the University of Sunderland have now received funding from America to carry out a comprehensive three-year study into the disease using the latest research techniques.

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    Orphanet: Cystinosis European Clinical Trials
    News, published 4 months ago

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    Details about studies in France and the Netherlands...

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    There's solace in numbers in the world of rare diseases
    News, published 4 months ago

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    ...For instance, it took parents Gail and Colin Daniels more than 11 years to put a name to the condition -- cystinosis -- that had dogged their daughter, Danielle, since birth....

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