Patient stories

View different patients' experiences living with type 1 Gaucher disease and taking Zavesca therapy.

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National Gaucher Foundation

This organization is dedicated to promoting education, awareness, and treatment of Gaucher disease.

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Understanding Your Zavesca Therapy is an Important First Step.
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Simple Steps for making the most of Zavesca.
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Help yourself by making healthy choices.
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Introducing Zavesca Cares. Learn more about the program and how to enroll.
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Zavesca Cares™

One-on-One Support for People Taking Zavesca

Real People, Real Answers

Zavesca Cares offers supplemental counseling and educational support services related to your Zavesca therapy, all at no cost to you.

You are eligible for Zavesca Cares if:

  • You've been diagnosed with type 1 Gaucher disease
  • You are taking Zavesca, and
  • You are 18 years or older

Once you sign up, you can reach a Zavesca Cares educator by calling 1-855-426-9277, or emailing ZavescaCares@actelion.com.

Zavesca Cares educators include a small team of trained nurses and dietitians, whom you or your caregiver can call for information to help answer important questions about topics like:

  • How to make the most of taking Zavesca
  • What to expect from your treatment with Zavesca
  • Healthy living tips (to help manage gastrointestinal issues when taking Zavesca)
  • Understanding type 1 Gaucher disease
  • Why following your healthcare provider's instructions is so important
  • How Zavesca Cares can help you and your caregiver

Zavesca Cares educators will contact you once you sign up. And, if you request further help, they can continue to reach out to you.

Signing up for Zavesca Cares is simple

  • Download the authorization form to share personal health information, and fax it to 1-866-782-6163.
  • You can print and mail the signed form to:

    Zavesca Cares
    Actelion Pharmaceuticals US, Inc.
    5000 Shoreline Court, Suite 200
    South San Francisco, CA 94080

Keep in mind that Zavesca Cares is a supplemental program. It cannot replace the advice and care of your healthcare team. Always consult your healthcare team if you have questions or concerns about your disease or treatment with Zavesca.

What is ZAVESCA?

ZAVESCA is a prescription medicine taken by mouth for adults with mild to moderate type 1 Gaucher disease. ZAVESCA is used only in people who cannot be treated with enzyme replacement therapy.

Important Safety Information for Zavesca:

In clinical studies, the most common adverse events due to Zavesca included weight loss, diarrhea, and trembling in the hand (tremor). Other common adverse reactions were excess gas (flatulence), abdominal pain, and headache. The most common serious adverse reaction was tingling or numbness in the hands or feet with or without pain (peripheral neuropathy). Patients should undergo neurological examination at the start of treatment and every 6 months thereafter; Zavesca should be reassessed in patients who develop symptoms of peripheral neuropathy. Zavesca may cause fetal harm if administered to a pregnant woman. Men should maintain reliable contraceptive methods and not plan to father a child while taking Zavesca and for 3 months after discontinuing treatment.

Please see full Prescribing Information.