# Ultragenyx Dojolvi Full Website > WE DO support our daughter Janelle and Michael parents to Hanna Living with CACT, a type of LC-FAOD View Patient Stories I DO inspire others Alexandra Living with LCHAD, a ## Pages - [Frequently Asked Questions](https://devw.dojolvi.com/frequently-asked-questions/): FIND ANSWERS TO FREQUENTLY ASKED QUESTIONS ABOUT DOJOLVI What resources are available to answer my questions on starting and staying... - [Prescribe Information](https://devw.dojolvi.com/prescribe-information/) - [Patient Stories](https://devw.dojolvi.com/patient-stories/): find hope ina community. Hear from others taking DOJOLVI and their caregivers Hear from others living with long chain fatty... - [Dosing & Administration](https://devw.dojolvi.com/dosing/): take DOJOLVI as prescribed. How is DOJOLVI taken? Watch Preparation Videos View Dosing Guide Always take DOJOLVI exactly as your... - [Patient Resources](https://devw.dojolvi.com/resources/): find support in one location. Patient support available for you Ultragenyx is committed to patients with rare diseases, which is... - [Patient Home](https://devw.dojolvi.com/): WE DO support our daughter Janelle and Michael parents to Hanna Living with CACT, a type of LC-FAOD View Patient... ## Posts # # Detailed Content ## Pages - Published: 2026-05-15 - Modified: 2026-06-15 - URL: https://devw.dojolvi.com/frequently-asked-questions/ FIND ANSWERS TO FREQUENTLY ASKED QUESTIONS ABOUT DOJOLVI What resources are available to answer my questions on starting and staying on DOJOLVI? Look to UltraCare® Patient Services for answers to questions about DOJOLVI through every step of your journey. An UltraCare Guide can help you understand insurance coverage, navigate financial assistance options, fully utilize patient support programs, and more. Visit UltraCare Patient Services at UltraCareSupport. com, or call 1-888-756-8657 to connect with an UltraCare Guide. Can seasonal changes, including flu season, affect my DOJOLVI dosing? Yes. Since DOJOLVI dosing partly depends on daily caloric intake and energy needs, seasonal changes can affect your or your child's dose. Check in with your healthcare team regularly, so you can plan together for how to adjust and manage treatment with DOJOLVI—the first and only FDA-approved treatment for children and adults with LC-FAOD. Why should I take DOJOLVI on “good days” when I feel energized and healthy? It is important to take DOJOLVI exactly as instructed by your LC-FAOD healthcare team, even on the "good days". DOJOLVI provides an alternate source of energy. Always take DOJOLVI exactly as instructed by your healthcare team. What do I do if I miss one of my daily DOJOLVI doses? Can I “double up” at the next meal? If you miss a dose of DOJOLVI, take the next dose as soon as possible, or as instructed by your LC-FAOD healthcare team. Take the following doses 3 to 4 hours apart. If it is not possible to take all the doses for the day, skip the missed dose. Learn more about DOJOLVI dosing. Should I stop taking DOJOLVI if it’s causing digestive or stomach problems? No, you should not stop taking DOJOLVI if you are experiencing digestive or stomach upset without guidance from your LC-FAOD healthcare team. Contact your provider or specialist to discuss possible adjustments to your DOJOLVI daily dose schedule if you have difficulty tolerating it as prescribed. It’s also important to take DOJOLVI with meals or snacks to help avoid gastrointestinal upset. What are travel-friendly ways to manage taking DOJOLVI when I’m away from home or have a busy social schedule? When taking DOJOLVI on the go, request labeled travel-sized bottles from your specialty pharmacy, and keep them in carry-on luggage with your Travel Letter. For social events, confirm your destination has fat-free soft foods, like yogurt or applesauce, or bring your own to stay on track. Take a look at the DOJOLVI Travel Guide for more details and guidance. I’m moving out/going to college. Will DOJOLVI give me flexibility that suits my lifestyle? While DOJOLVI is taken at least 4 times daily, how and when you take your doses can be scheduled and proactively managed, giving you flexibility with your treatment. Check in with your LC-FAOD healthcare team to set up a plan around any lifestyle changes that may impact your DOJOLVI routine. I have a feeding tube—are there specific plastics (like PVC) that I need to avoid using with DOJOLVI? Do not use DOJOLVI in feeding tubes made of polyvinyl chloride (PVC). Instead, use feeding tubes made of polyurethane or silicone. DOJOLVI should be prepared and taken using containers, oral syringes, or measuring cups made of compatible materials, such as stainless steel, glass, and silicone. Keep an eye on tubing to make sure there’s no breakdown of materials. See the DOJOLVI Compatible Materials Guide for more information. - Published: 2022-12-12 - Modified: 2026-06-01 - URL: https://devw.dojolvi.com/patient-stories/ find hope ina community. Hear from others taking DOJOLVI and their caregivers Hear from others living with long chain fatty acid disorders (LC-FAOD ) who take DOJOLVI and their caregivers. Watch Hanna's Story Janelle and Mike share their daughter Hanna's journey from being diagnosed with CACT to creating a treatment plan that works for their family as she transitions into daycare. Watch Video Watch Alexandra's Story Find out how Alexandra, living with LCHAD, navigates college independently with the support of her family, friends, and healthcare team. Watch Video Watch Daniel's Story Learn how Daniel, a college student living with CPT II, finds hope within his community and incorporates DOJOLVI into his daily routine. Watch Video Learn more about the resources and support that are available for you and your family View Resources - Published: 2021-11-02 - Modified: 2026-06-11 - URL: https://devw.dojolvi.com/dosing/ take DOJOLVI as prescribed. How is DOJOLVI taken? Watch Preparation Videos View Dosing Guide Always take DOJOLVI exactly as your LC-FAOD healthcare team advises Before taking DOJOLVI, tell your healthcare provider about all of your medical conditions, including if you: are pregnant or plan to become pregnant. It is not known if DOJOLVI will harm your unborn baby are breastfeeding or plan to breastfeed. It is not known if DOJOLVI passes into breast milk are taking a pancreatic lipase inhibitor, such as orlistat, as it may affect how well DOJOLVI works Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. If you are taking another medium-chain triglyceride (MCT) product, stop taking the MCT before starting DOJOLVI Use an oral syringe or a measuring cup to measure the prescribed dose of DOJOLVI Do not mix or give DOJOLVI using containers, oral syringes, or measuring cups made of polystyrene (a type of plastic that can be solid or foam) or polyvinyl chloride (PVC), a solid plastic material Mix or give DOJOLVI using containers, oral syringes, or measuring cups made of materials such as stainless steel, glass, or high-density polyethylene (HDPE), polypropylene, low-density polyethylene (LDPE), polyurethane, and silicone (types of plastic materials). After use, rinse materials and containers well with cold water and wipe dry Take DOJOLVI at least 4 times a day with meals or snacks, and always mix well with soft food or drink or medical food or formula before taking. Do not take DOJOLVI alone to avoid stomach upset If you take DOJOLVI by mouth, mix well with soft food or drink such as: Plain or artificially sweetened fat-free yogurt Fat-free milk, formula, or cottage cheese Whole-grain hot cereal Fat-free, low-carbohydrate pudding, smoothies, applesauce, or baby food The unused DOJOLVI mixture may be stored for up to 24 hours in the refrigerator. If not used within 24 hours, throw away (dispose of) the DOJOLVI mixture in the trash. Do not pour down the sink. Do not save for later. If you give DOJOLVI by feeding tube, mix well with medical food or formula before giving by a feeding tube y-connector, or feeding tube extension set. Feeding tubes may not work as well or stop working over time when taking DOJOLVI. Do not use DOJOLVI in feeding tubes made of polyvinyl chloride (PVC). Check the feeding tube to make sure it is working properly and not breaking down. If you miss a dose, take the next dose as soon as possible. Take the following doses 3 to 4 hours apart. If it is not possible to take all the doses for the day, skip the missed dose. Speak to your healthcare team and see the Instructions for Use included with the Patient Information for more information. “DOJOLVI is part of my daily routine. I take DOJOLVI 4 times a day with meals and snacks up until I go to bed. ” Discover Patient Stories HOW TO PREPARE DOJOLVI Estos segmentos de video muestran cómo usar los componentes de dosificación para preparar una dosis de Dojolvi. Si tiene alguna duda, pida a su equipo de salud que le muestre cómo medir la dosis prescrita. These video segments demonstrate how to use the dosing components to prepare a DOJOLVI dose. If you have any questions, ask your healthcare team to show you how to measure your prescribed dose. Choose video: Ver videos en Español Descargar la guía de dosificación View videos in English Inserting the press-in bottle adapter Video 1 - Explore the depths of our planet's oceans. Experience the stories that connect their world to ours. Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum. HOW TO MIX DOJOLVI These videos demonstrate how to properly mix DOJOLVI into compatible soft foods or drinks when preparing to take the medication orally. If you have any questions, ask your healthcare team how to properly prepare DOJOLVI. To avoid gastrointestinal upset, thoroughly mix or emulsify DOJOLVI into the appropriate amount of soft food or drink as instructed by your healthcare provider. For instructions on how to prepare for use with a feeding tube, please refer to the Instructions for Use. If the DOJOLVI mixture is not used within 24 hours, throw away (dispose of) in the trash. Do not pour down the sink. Do not save for later. See the DOJOLVI® (triheptanoin) full Prescribing Information, including Patient Information, for additional preparation and administration information. Inserting the press-in bottle adapter Video 1 - Explore the depths of our planet's oceans. Experience the stories that connect their world to ours. Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum. MATERIALS TO USE WITH DOJOLVI Use this Materials Compatibility Reference to help you select appropriate materials to use with DOJOLVI Download the Details TRACKING DAILY DOSES It’s important to stick with your treatment plan. Frequent monitoring, especially as you begin taking DOJOLVI, can: Help you adapt to and maintain your treatment plan Help your healthcare team decide if any dosing modifications are needed Track your doses in 3 easy steps. 1 2 3 1. DIVIDE Divide the prescribed daily amount of DOJOLVI by at least 4 to determine each dose amount. Ex: 56 mL/4 = 14 mL per dose 2. RECORD Recording the exact time you take your... - Published: 2020-07-14 - Modified: 2026-06-15 - URL: https://devw.dojolvi.com/resources/ find support in one location. Patient support available for you Ultragenyx is committed to patients with rare diseases, which is why we created UltraCare Patient Services for DOJOLVI—your guide throughout your treatment journey. Our UltraCare Guides have varied backgrounds, including social workers, healthcare professionals, and patient advocates, and are ready to help you gain and maintain access to DOJOLVI. UltraCare Guides can help you to: Understand your insurance coverage Utilize patient support program resources, including help with billing and coding Find and navigate available financial assistance and patient assistance programs that can help to cover co-pay and other out-of-pocket expenses Start and stay on DOJOLVI treatment through personalized counseling and education based on the recommendations, advice, and prescription of your healthcare team Take the first step Step 1: Ask your healthcareprovider to fax your completed* Start Form to 1-415-723-7474. Step 2: Sign up by visiting UltraCare Patient Services or call 1-888-756-8657 to connect with our UltraCare Guides. Visit UltraCare *Please note that a completed form is required for patient enrollment. Download DOJOLVI materials DOJOLVI Travel Guide Planning a trip away from home while being treated with DOJOLVI? Get tips on what to ask your doctor, how to pack, and key things to consider before you travel Download | Share Back-to-School Checklist A checklist to help you know what to discuss with your or your loved one's healthcare team before each school year starts Download | Share DOJOLVI Brochure Learn about LC-FAOD, DOJOLVI, and patient support available to you Download | Share DOJOLVI Dosing Guide Information to discuss with your healthcare team on how to store, administer, and keep track of DOJOLVI doses Download | Share Daily Dosing Tracker A tool you can use to keep track of your DOJOLVI doses and notes for your healthcare team Download | Share UltraCare Patient Resource Guide An overview of the UltraCare Patient Services program and the resources available to you Download | Share Materials Compatibility Reference A reference overview of materials that are compatible or incompatible to use with DOJOLVI Download | Share Descargar materiales de Dojolvi Folleto de DOJOLVI Obtenga información sobre LC-FAOD, DOJOLVI y la asistencia al paciente disponible Descargar | Compartir Guía de dosificación de DOJOLVI Información sobre cómo almacenar, administrar y hacer un seguimiento de las dosis de DOJOLVI que puede conversar con su equipo de atención médica Descargar | Compartir Guidance for Preparing DOJOLVI These video segments demonstrate how to use the dosing components to prepare a DOJOLVI dose. Watch Videos Ver videos en Español. Guidance for mixing DOJOLVI into foods This video series will give a demonstration on how to thoroughly mix DOJOLVI with soft foods or drinks when taking orally. DOJOLVI should not be administered alone to avoid gastrointestinal upset. Watch Videos Learn more and find your community Metabolic disease information and advocacy A scientific organization specifically dedicated to research and education about fatty acid oxidation disorders An advocacy organization working to educate and support patients with mitochondrial disease and their families Rare disease information and advocacy A center within the National Institutes of Health (NIH) that maintains a list of rare diseases and related terms to help people find reliable information about their disease An advocacy organization that provides support, education, and resources to the rare disease community A patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them A dedicated Ultragenyx team committed to providing rare disease education, resources, patient stories, and events Share CopyLink CopyCopied to clipboard Copy link Facebook LinkedIn Twitter Email - Published: 2020-07-06 - Modified: 2026-06-16 - URL: https://devw.dojolvi.com/ WE DO support our daughter Janelle and Michael parents to Hanna Living with CACT, a type of LC-FAOD View Patient Stories I DO inspire others Alexandra Living with LCHAD, a type of LC-FAOD View Patient Stories I DO advocate for myself Daniel Living with CPT II, a type of LC-FAOD View Patient Stories View Patient Stories View Patient Stories View Patient Stories DOJOLVI (triheptanoin) is the first and only FDA-approved treatment for children and adults with long-chain fatty acid oxidation disorders (LC-FAOD). WHAT IS DOJOLVI? DOJOLVI is a prescription medicine used to treat long-chain fatty acid oxidation disorders (LC-FAOD) in children and adults. How does DOJOLVI work? DOJOLVI provides an alternate source of energy. It is a synthetic medium odd-chain 7-carbon triglyceride (C7). DOJOLVI bypasses the enzyme deficiencies that cause LC-FAOD to provide a source of calories and fatty acids that can be converted to energy. Talk to your healthcare team to learn more about DOJOLVI. Your browser does not support the video tag. WHAT ARE LC-FAOD? Long-chain fatty acid oxidation disorders (LC-FAOD) are rare inherited disorders that prevent the body from breaking down long-chain fatty acids into energy during metabolism. People living with LC-FAOD have difficulty producing enough energy because of their body’s inability to use long-chain fatty acids as an energy source during times of: Fasting Illness Prolonged exercise If you or your loved one are living with one of the different types of LC-FAOD, DOJOLVI may provide an alternative source of energy. Ask your healthcare team if DOJOLVI is right for you. STARTING DOJOLVI UltraCare® Patient Services is here to help you: Gain access to DOJOLVI Understand your insurance coverage Determine your eligibility for financial and patient assistance programs Utilize patient support program resources Visit UltraCare A completed Start Form is required for enrollment in UltraCare Patient Services. Talk to your healthcare team. Download the Guide TAKING DOJOLVI Download this step-by-step guide to discuss with your healthcare team how to store, administer, and keep track of DOJOLVI doses. Download the Guide WORKING WITH YOUR HEALTHCARE TEAM Patients treated with DOJOLVI should work with a team of clinical specialists, such as metabolic doctors, dietitians, and nurse practitioners. Your healthcare team may: Start your dose slowly, beginning with a low dose of DOJOLVI and then increasing it over time to help you avoid side effects Manage your diet, checking in regularly and providing you with nutritional plans based on your specific needs Important: Stop taking any other medium-chain triglyceride (MCT) products before you begin DOJOLVI. Learn more about taking DOJOLVI “There are going to be challenges, but take it one step at a time. Make sure you’re celebrating the good days and the milestones. ” Discover Patient Stories ## Posts