Since OTC-D is a genetic condition, it’s important to share your OTC-D diagnosis along with information on signs and symptoms with others in your family. You may have family members interested in genetic testing as well, especially if they experience symptoms themselves. Use the information and resources below to help get started.
Use the Family Map to help identify all the females
on your maternal side who may be at risk for OTC-D.
When I talked to my family about being tested, the initial thought was they were a little bit hesitant. Especially my mom. And I think, for her, it was because she didn’t want to think that she might have passed this on to me.”
You may be nervous about having these conversations with certain family members, and it never hurts to practice! Grab a friend and a cup of coffee and go through these example conversation starters to help get used to and overcome resistance when talking about OTC-D.
Response: "Congratulations, that’s so exciting! You would make a great mom! Now that you are considering having kids, it’s a good time to speak with your doctor about testing for OTC-D. Since the condition is genetic, you may want to know as much as you can to prepare! I can share genetic testing information with you if interested."
Response: “Ugh. I’m so sorry you’re not feeling well. I’ve experienced some of the symptoms you’re describing, which my doctor has confirmed have to do with my OTC-D diagnosis. You may want to discuss your symptoms with your doctor as it helped me learn how to manage and minimize them—especially my headaches. I can refer you to my doctor if you’re interested.
Response: "I totally hope you are not affected either! I just know OTC-D is genetic so I wanted to make sure you had the same information I have, especially if you experience any common symptoms of OTC-D like headache, fatigue, or brain fog.”
Response: "Trust me, the last thing I want to talk about are health problems, but I have been diagnosed with OTC-D and I feel it’s my duty to share that information with my family since it’s genetic. I care about you and want to make sure you are OK and know everything I know. I’m always here if you ever want to talk in confidence.”
Response: "It can be overwhelming to find out where to start. You can use this OTC-D Specialist Finder to find a specialist near you who can help walk you through the process and give you the additional information or resources you may need. I’m also here to support you and help with any questions along the way.”
Connect with a healthcare team that understands how to diagnose and manage OTC-D.
Your Patient Access Liaison (PAL) can provide more information on genetic testing for your family.
Personalize this template to share OTC-D information with relatives who may be at risk themselves.
Download personal letter Copy video link
Need support in your outreach? Here's a template someone you trust can use to share the OTC-D information on your behalf.
Download trusted person letter Copy video link
Your doctor can be a good partner in providing at-risk relatives with information. Here's an easy-to-customize template your doctor can use.
Download doctor letter Copy video linkConnect with a healthcare team that understands how to diagnose and manage OTC-D.
Discussions around OTC-D with your partner can be difficult depending on the topics of conversation, such as family planning.
RAVICTI may cause serious side effects, including:
Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, 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:
Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.
Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.
Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:
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. You may report side effects to FDA at 1-800-FDA-1088.
For additional Important Safety Information, click here for the Medication Guide and discuss with your doctor.
RAVICTI may cause serious side effects, including:
Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects.