Whether your child or loved one has been diagnosed with peroxisomal biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD), you may be faced with different challenges along his or her journey. Having the right resources and support can make a difference in knowing how to handle new situations if they arise.
Educational resources for PBD-ZSD
PBD-ZSD: What You Need to Know
Dive into this webinar about PBD-ZSD including symptoms, diagnosis, treatment, and management of the disorder.
Dr. James Heubi
Pediatric Gastroenterologist at Cincinnati Children’s Hospital.
PBD-ZSD: A Caregiver’s Story
Listen to these caregivers share their experience about raising a son with PBD-ZSD.
Connect with helpful organizations
There are many organizations dedicated to helping people
manage PBD-ZSD and learn more about the disorder.
Learn about PBD-ZSD from the National Organization for Rare Disorders (NORD)—an organization dedicated to identifying, treating, and curing rare disorders through education, advocacy, research, and service.Learn More
Participate in research studies through the Childhood Liver Disease Research Network (ChiLDReN)—a collaborative team of doctors, nurses, research coordinators, medical facilities, and patient support organizations dedicated to learning more about rare liver diseases.Learn More
Travere Therapeutics is not affiliated with the resources listed above.
Be a part of our registry for people taking CHOLBAM® (cholic acid) capsules
Registry studies are carried out to collect information from people who have a particular condition or are taking a certain medicine. Travere Therapeutics is conducting a registry study to deepen their understanding of how CHOLBAM® is used, how well it works, and its safety. This registry is observational, which means that no new treatment or drugs are given to patients as part of the registry. It will not change the way doctors treat your child’s condition.
If you sign your child or loved one up for The REPLACE registry:
- Your child’s doctor will ask you questions about your child’s health and use of medicines, including CHOLBAM®, at each routine visit.
- All information will remain confidential.
- You could make a difference in the lives of people who are prescribed CHOLBAM® in the future.
If your doctor is considering prescribing CHOLBAM® and you would like to be a part of The REPLACE registry, please contact firstname.lastname@example.org for more information.
You can also find more information about this registry at clinicaltrials.gov.
View the full registry brochure.
WHAT IS CHOLBAM® (cholic acid) capsules?
CHOLBAM is a prescription medicine. It is a bile acid used for
- Treatment of bile acid synthesis disorders (malfunction in the production of bile acid in the liver) due to a lack of a single enzyme responsible for bile acid production
- Treatment (in addition to other treatments) of peroxisomal disorders (a loss of function in important parts of the cell), including Zellweger spectrum disorders, in patients who show signs or symptoms of liver disease, pale stools due to too much fat, or problems resulting from not absorbing certain vitamins (A, D, E, K)
The safety and effectiveness of CHOLBAM on symptoms outside of the liver have not been studied.
IMPORTANT SAFETY INFORMATION
CHOLBAM may not be right for you. Before taking CHOLBAM, tell your doctor about:
- All health conditions you may have and any medications you may be taking
- If you are pregnant or plan to become pregnant. Women who become pregnant during CHOLBAM treatment are encouraged to call 1-844-202-6262
- If you are breastfeeding or plan to breastfeed
What are the possible side effects of CHOLBAM?
- Serious Side Effects: You will need to undergo laboratory testing periodically while on treatment to assess liver function. CHOLBAM may worsen liver function. Tell your doctor right away if you experience symptoms associated with worsening of liver function (e.g., skin or the whites of eyes turn yellow, urine turns dark or brown [tea colored], pain on the right side of stomach, bleeding or bruising occurs more easily than normal, or increased lethargy). Your doctor will decide if you need to discontinue treatment with CHOLBAM.
- Most Common Side Effects: Diarrhea, acid reflux that damages the lining of the esophagus, discomfort and fatigue, yellowing of skin or eyes, skin lesion, nausea, abdominal pain, formation of growths in the intestinal tract, urinary tract infection, nerve damage causing change in sensation in extremities.
These are not all the possible side effects of CHOLBAM. Tell your doctor if you have any side effect that bothers you or that does not go away.
You may report negative side effects to Travere Medical Information at 1-877-659-5518, or to the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
Please see accompanying full Prescribing Information for additional Important Safety Information.