Are you feeling that family and friends don't understand what it's like to live with a urea cycle disorder? We can help you connect with patients and families who have been there. If you'd like to talk with another UCD patient or caregiver, sign up to speak with one of our UCD Mentors. Watch the videos below to learn from others living with urea cycle disorders. Learn about starting RAVICTI® (glycerol phenylbutyrate), how RAVICTI works, and how to take RAVICTI. There are also real life stories from UCD patients and caregivers and introductions to our UCD Mentors.
RAVICTI is used in adults and children 2 months of age and older for long-term management of high levels of ammonia in the blood (hyperammonemia) caused by a urea cycle disorder. RAVICTI must be used along with a low-protein diet and, in some cases, dietary supplements. RAVICTI should only be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI is not used to treat extremely high levels of ammonia in the blood (hyperammonemic crises) in people with UCDs as they may require rapidly acting medication. It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.
"I chose RAVICTI… it's easy for me to take, and I can move on to whatever else I need to do."
Experiences may not be typical. UCDs can manifest in different ways and at different times in a patient's life.
Sign up to meet other patients and caregivers who have been there.
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“I chose RAVICTI…[because] it's easy for me to take, and I can move on to whatever else I need to do.” Experiences may not be typical. UCDs can manifest in different ways and at different times in a patient's life.
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“My daughter Mya has been on RAVICTI for almost 6 years and we continue to like the convenience"
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"I first learned that I had a urea cycle disorder when my son was diagnosed. For the first time, so many unanswered questions finally made sense." -Patricia Experiences may not be typical. UCDs can manifest in different ways and at different times in a patient's life.
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"Just because you have a urea cycle disorder doesn't mean you can't live a fulfilled life." Experiences may not be typical. UCDs can manifest in different ways and at different times in a patient's life.
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"You’re not alone. You have resources. Don’t be afraid to reach out." Experiences may not be typical. UCDs can manifest in different ways and at different times in a patient's life.
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"I feel like there are people out there that need to have someone to rely on." Experiences may not be typical. UCDs can manifest in different ways and at different times in a patient's life.
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"You can do this. There are many people like myself who are here ready to help." Experiences may not be typical. UCDs can manifest in different ways and at different times in a patient's life.
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"There’s no one who really understands unless they've done that and been there." Experiences may not be typical. UCDs can manifest in different ways and at different times in a patient's life.
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"Just being able to connect with people who understand what you're going through is amazing." -Amy
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"As the mother of a child with a rare disease, you have to find your own voice, and use it." –Amy
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"My greatest hope for my son would be that he could think about having a family of his own." – David
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"You need to be very honest with whoever you are choosing to build a relationship with." – Lauren
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"You need to be very honest with whoever you are choosing to build a relationship with." – Lauren
What is RAVICTI?
RAVICTI (glycerol phenylbutyrate) Oral Liquid is a prescription medicine used for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases, dietary supplements.
RAVICTI is not used to treat extremely high levels of ammonia in the blood (hyperammonemic crisis) in people with UCDs.
It is not known if RAVICTI is safe and effective for the treatment ofN-acetylglutamate synthase (NAGS) deficiency.
IMPORTANT SAFETY INFORMATION
What is the most important safety information I should know about RAVICTI?
RAVICTI may cause serious side effects, including:
Nervous system side effects (Neurotoxicity). The breakdown of RAVICTI produces the byproduct phenylacetate (PAA), which may cause nervous system side effects.
Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:
Who should not take RAVICTI?
Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you experience any of the following symptoms of an allergic reaction while taking RAVICTI:
What should I tell my doctor before taking RAVICTI?
Tell your doctor about any medical conditions and if you:
What are possible side effects of RAVICTI?
RAVICTI may cause serious side effects, including:
See "What is the most important information I should know about RAVICTI?"
The most common side effects of RAVICTI in adults include:
The most common side effects of RAVICTI in children 2 years to 17 years of age include:
The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:
The most common side effects of RAVICTI in children less than 2 months of age include:
These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects.
For additional important safety information, click here for the Full Prescribing Information and Medication Guide and discuss with your doctor.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088.
What is RAVICTI?
RAVICTI (glycerol phenylbutyrate) Oral Liquid is a prescription medicine used for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases, dietary supplements.
RAVICTI is not used to treat extremely high levels of ammonia in the blood (hyperammonemic crisis) in people with UCDs.
It is not known if RAVICTI is safe and effective for the treatment ofN-acetylglutamate synthase (NAGS) deficiency.
IMPORTANT SAFETY INFORMATION
What is the most important safety information I should know about RAVICTI?
RAVICTI may cause serious side effects, including:
Nervous system side effects (Neurotoxicity). The breakdown of RAVICTI produces the byproduct phenylacetate (PAA), which may cause nervous system side effects.
Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:
Who should not take RAVICTI?
Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you experience any of the following symptoms of an allergic reaction while taking RAVICTI:
What should I tell my doctor before taking RAVICTI?
Tell your doctor about any medical conditions and if you:
What are possible side effects of RAVICTI?
RAVICTI may cause serious side effects, including:
See "What is the most important information I should know about RAVICTI?"
The most common side effects of RAVICTI in adults include:
The most common side effects of RAVICTI in children 2 years to 17 years of age include:
The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:
The most common side effects of RAVICTI in children less than 2 months of age include:
These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects.
For additional important safety information, click here for the Full Prescribing Information and Medication Guide and discuss with your doctor.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088.