Sangre y Tripas? Espere hasta que usted vea cómo esta artista holandésa lidia con la cistinosis

Rare Conect explica la vida de Annie Kwakkel que nació con cistinosis,una enfermedad genética que afecta aproxima a 1 en 100,00 a 200,000 recién nacidos en todo el mundo. Hoy…

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How to Not Die from Cystinosis: New Research on Treatments Offer Hope

The National Institutes of Health (NIH) recently published an important finding from a clinical trial that could affect those with cystinosis. The research is certainly worth reading--especially if you or your loved one has cystinosis. But…

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Editor’s Choice: Art & Cystinosis PLUS Treatment Alternatives for Cystic Fibrosis

Happy First Week of February! Do you have a rare disease and find art as an outlet for you? Are you always fighting to find more ways to treat your…

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