UCD Patient Videos

You may have a rare condition, but you're not alone.

Are you feeling that family and friends don't understand what it's like to live with a urea cycle disorder (UCD)? 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) Oral Liquid, 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 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.

Starting RAVICTI

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Starting RAVICTI: Lauren's story

Lauren's Story

“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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Starting RAVICTI: Amy and Mya's story

Amy & Mya's Story

“My daughter Mya has been on RAVICTI for almost 6 years and we continue to like the convenience"

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Starting RAVICTI: Patricia & Isaac's story

Patricia & Isaac's Story

"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.

UCD Mentors

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Meet Lauren, a UCD patient

Meet Lauren

"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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Meet Amy, a UCD caregiver

Meet Amy

"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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Meet Isaac, a UCD patient

Meet Isaac

"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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Meet Patricia, a UCD caregiver and patient

Meet Patricia

"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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Meet David, a UCD Caregiver

Meet David

"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.

Real Life Stories

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Connecting with the Community after UCD Diagnosis

Connecting With the Community After UCD Diagnosis

"Just being able to connect with people who understand what you're going through is amazing." -Amy

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Advocating for your child with a UCD

Advocating for Your Child

"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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Family managing a UCD

My Greatest Hope

"My greatest hope for my son would be that he could think about having a family of his own." – David

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Relationships and UCDs

Relationships and UCDs

"You need to be very honest with whoever you are choosing to build a relationship with." – Lauren

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Family with a UCD in living room

Thank You, UCD Caregivers

"You need to be very honest with whoever you are choosing to build a relationship with." – Lauren

How RAVICTI Works

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Managing a UCD Video

Managing a UCD

See how RAVICTI helps to remove excess ammonia from the body.

RAVICTI for Babies and Toddlers (2 months to 2 years of age)

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Young child with a UCD,  playing outside with bubbles

RAVICTI for Babies and Toddlers (2 months to 2 years of age)

See how RAVICTI can help control ammonia levels for children 2 months and older

How to Take RAVICTI

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Child taking RAVICTI by mouth

Taking RAVICTI by Mouth

RAVICTI can be taken by mouth, even in patients with a feeding tube or g-tube

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Taking RAVICTI by feeding tube

Taking RAVICTI by Feeding Tube

RAVICTI can be taken by mouth, even in patients with a feeding tube or g-tube

APPROVED USES and IMPORTANT SAFETY INFORMATION for RAVICTI
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.

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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:

  • sleepiness
  • lightheadedness
  • change in taste
  • problems with hearing
  • confusion
  • problems with memory
  • worsening of numbness, tingling, or burning in your hands or feet
  • headache
  • feeling very tired (fatigue)
  • nausea
  • vomiting

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:

  • wheezing
  • shortness of breath
  • cough
  • low blood pressure
  • flushing
  • nausea
  • skin rash

What should I tell my doctor before taking RAVICTI?

Tell your doctor about any medical conditions and if you:

  • Have liver or kidney problems.
  • Have pancreas or bowel (intestine) problems.
  • Are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby.
    • Pregnancy Registry: There is a Pregnancy Registry for women who take RAVICTI just before becoming pregnant or who become pregnant during treatment with RAVICTI. The purpose of this registry is to collect information about the health of you and your baby. Talk to your doctor about how you can join the Pregnancy Registry. For more information about this registry, call 1-855-823-2595 or visit www.ucdregistry.com.
  • Are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

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:

  • diarrhea
  • gas
  • headache
  • abdomen (stomach) pain
  • vomiting
  • tiredness
  • decreased appetite
  • indigestion or heartburn

The most common side effects of RAVICTI in children 2 years to 17 years of age include:

  • upper abdomen (stomach) pain
  • rash
  • nausea
  • vomiting
  • diarrhea
  • decreased appetite
  • headache

The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:

  • low white blood cell count (neutropenia)
  • vomiting
  • diarrhea
  • fever
  • reduced food intake
  • cough
  • stuffy nose
  • runny nose
  • skin rash
  • small round bumps on the skin

The most common side effects of RAVICTI in children less than 2 months of age include:

  • vomiting
  • rash
  • gastroesophageal reflux
  • increased levels of liver enzymes in the blood
  • decreased appetite and reduced food intake
  • low red blood cell count (anemia)
  • cough
  • loss of too much body fluid (dehydration)
  • too much acid in the blood (acidosis)
  • high blood platelet count (thrombocytosis)
  • low blood platelet count (thrombocytopenia)
  • low blood neutrophil count (type of white blood cell) (neutropenia)
  • high white blood cell count (lymphocytosis)
  • diarrhea
  • gas
  • constipation
  • fever
  • drowsiness (lethargy)
  • irritability
  • agitation

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:

  • sleepiness
  • lightheadedness
  • change in taste
  • problems with hearing
  • confusion
  • problems with memory
  • worsening of numbness, tingling, or burning in your hands or feet
  • headache
  • feeling very tired (fatigue)
  • nausea
  • vomiting

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:

  • wheezing
  • shortness of breath
  • cough
  • low blood pressure
  • flushing
  • nausea
  • skin rash

What should I tell my doctor before taking RAVICTI?

Tell your doctor about any medical conditions and if you:

  • Have liver or kidney problems.
  • Have pancreas or bowel (intestine) problems.
  • Are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby.
    • Pregnancy Registry: There is a Pregnancy Registry for women who take RAVICTI just before becoming pregnant or who become pregnant during treatment with RAVICTI. The purpose of this registry is to collect information about the health of you and your baby. Talk to your doctor about how you can join the Pregnancy Registry. For more information about this registry, call 1-855-823-2595 or visit www.ucdregistry.com.
  • Are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

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:

  • diarrhea
  • gas
  • headache
  • abdomen (stomach) pain
  • vomiting
  • tiredness
  • decreased appetite
  • indigestion or heartburn

The most common side effects of RAVICTI in children 2 years to 17 years of age include:

  • upper abdomen (stomach) pain
  • rash
  • nausea
  • vomiting
  • diarrhea
  • decreased appetite
  • headache

The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:

  • low white blood cell count (neutropenia)
  • vomiting
  • diarrhea
  • fever
  • reduced food intake
  • cough
  • stuffy nose
  • runny nose
  • skin rash
  • small round bumps on the skin

The most common side effects of RAVICTI in children less than 2 months of age include:

  • vomiting
  • rash
  • gastroesophageal reflux
  • increased levels of liver enzymes in the blood
  • decreased appetite and reduced food intake
  • low red blood cell count (anemia)
  • cough
  • loss of too much body fluid (dehydration)
  • too much acid in the blood (acidosis)
  • high blood platelet count (thrombocytosis)
  • low blood platelet count (thrombocytopenia)
  • low blood neutrophil count (type of white blood cell) (neutropenia)
  • high white blood cell count (lymphocytosis)
  • diarrhea
  • gas
  • constipation
  • fever
  • drowsiness (lethargy)
  • irritability
  • agitation

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.