You’ll Never Have To Worry About Your Child Again (at School)!

Raptor Pharmaceuticals, the makers of the cystinosis-treating medication known as PROCYSBI®, go above and beyond for the people they serve.

If you have a child with cystinosis (or any chronic disease really), you know the challenges of informing and educating the school staff.

As a parent of a child with a chronic disease, YOU are the ultimate caregiver. But, unless you want to keep your kid in a bubble, you’ve got to let them go to school and discover who they are—which means, in order to quiet your separation anxieties, you’ve got to know your child is in good hands at school.

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Face-to-face conversations are a great way to inform your child’s school’s staff. Some parents put together packets and notes so that any answers teachers or nurses may need are on hand. Still, it can be hard to organize it all.

That’s why Raptor Pharmaceuticals has developed the Cystinosis Care Instructions.

On 11 printable pages, you’ll have the space to provide:

  • Emergency contact information
  • Doctor contact information
  • Specific needs
  • Dietary restrictions
  • Emergency room protocol
  • Medications and supplements
    • Dose
    • Instructions
    • Side effects
    • Schedule

There’s also a general cystinosis overview and clinical considerations in the packet to which the school staff can refer.

Does informing your child’s school staff about cystinosis GET any easier? Probably, but this is definitely a start for sure.


What have you found is easiest when informing the school about your child’s chronic disease? Any tips? Leave a comment below!

Lady Kehveen Abernathy

Lady Kehveen Abernathy

Lady Kehveen Abernathy, of noble birth (or so she’d like to believe), is what many would call a youthful “old soul.” As a self-proclaimed “caregiver to the world,” impassioned about life, triumph, and all things beauty, Lady Kehveen strives to love others, seek understanding, and most importantly, spread awareness. But don’t let her sweet demeanor deceive you. Dressed to the nines over corset and petticoat, she’s made it her mission to defend the innocent and fight all things evil on this Earth. And being no stranger to chronic disease, she knows exactly where to start.

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