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If you or your child is diagnosed with cystinosis, you’ll want to find out as much as you can about the disorder. The following educational and advocacy groups provide information about cystinosis.
Cystinosis Research Network
The Cystinosis Research Network is dedicated to supporting and advocating research, providing family assistance, and educating the public and medical community about cystinosis.
National Organization for Rare Disorders (NORD)
NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
CYSTADROPS is a cystine-depleting agent indicated for the treatment of corneal cystine crystal deposits in adults and children with cystinosis.
It’s important to know that cystine-depleting oral medicines (medicines taken by mouth) do not reduce the build-up of cystine crystals in your cornea. These medicines are delivered to organs in your body through your bloodstream. But these medicines cannot reach your cornea since it does not have blood vessels. CYSTADROPS is an eye drop medicine that reduces the build-up of cystine crystals in your cornea over time with continuous treatment.
If you miss a dose, administer the missed dose as soon as possible and then use the drops at your next regular scheduled time.
Use CYSTADROPS exactly as your healthcare provider tells you to use it.
The active ingredient in CYSTADROPS, cysteamine, breaks down over time when exposed to light and air. Throw away any unused CYSTADROPS 7 days after first opening and start a new bottle.
Store CYSTADROPS in your refrigerator before opening it. After opening, keep CYSTADROPS at room temperature between 68°F to 77°F (20°C to 25°C). Do not refrigerate after opening.
The most common side effects are eye pain (stinging), blurred vision, eye irritation (burning), eye redness, discomfort at instillation site (sticky eyes or sticky eyelids), eye itching, watery eyes, medicine deposit on the eye lashes or around the eyes. Talk to your doctor if you are experiencing any side effects.
CYSTADROPS requires a prescription from your doctor. You will receive CYSTADROPS from the specialty pharmacy called Anovo. Anovo will contact you by phone and then will ship your medicine to you. Be sure to return all calls from Anovo to make sure you get your medicine when you need it.
In most cases you will receive 4 weeks (4 bottles) of CYSTADROPS at one time. Anovo will ship the bottles in a refrigerated container. Be sure to keep your medicine in the refrigerator until it’s time to use it.
Yes. A copay assistance program and a patient assistance program can help eligible patients with the cost of CYSTADROPS. The specialty pharmacy Anovo (866-925-6212) can determine if you qualify for these programs.
Call the specialty pharmacy Anovo (866-925-6212) if you have questions about CYSTADROPS.
CYSTADROPS (cysteamine ophthalmic solution) 0.37% is a cystine-depleting agent indicated for the treatment of corneal cystine crystal deposits in adults and children with cystinosis.
INDICATIONS AND IMPORTANT SAFETY INFORMATION