Young girl sitting outside reading a book.

Support & Resources

Support and Resources for Families Living with PFIC

Albireo Assist logo–Personalized Support Services Helping Navigate the Way

Albireo Assist is a patient support program for people taking Bylvay and their caregivers.

People who are prescribed Bylvay and their caregivers can enroll in Albireo Assist. Once enrolled, they are assigned dedicated Care Coordinators who are available throughout their treatment journey. Care Coordinators can provide:

Light green circle with graphic depicting a person sitting at desk on the phone

Financial & Insurance Assistance

Blue circle with graphic depicting person wearing phone headset

Dedicated, Live Support

Blue circle with graphic depicting a person reading a book

Care Logistics

Bylvay (odevixibat) is available only through Albireo Assist specialty pharmacy partners. Your Care Coordinator will connect you to a specialty pharmacy who will fill the prescription each month and deliver it directly to you—even if you are traveling or moving.

Situations change and we’re here to help navigate those changes so that they don’t have an impact on treatment. If you change jobs, change doctors, change insurance, or change locations, just let us know—we’ll work to help make sure that these changes don’t affect getting the medication.

Your Care Coordinator is here to help with those kinds of logistics. Call 855-ALBIREO (855-252-4736) or contact your Care Coordinator at their direct number or email address.

Dark green circle with graphic depicting four-person family

Educational Materials & Programs

In addition to all the services that are part of Albireo Assist, we also offer educational and support resources for patients and their families. These include informative, downloadable materials, as well as links to patient organizations and community groups. The Resources page has the details and the downloads.

We're here to help answer your questions or to point you to resources that can help.

Online Resources

  • PFIC Advocacy and Resource Network aims to improve the lives of patients and families worldwide affected by PFIC.
  • National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. It is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
  • American Liver Foundation (ALF) s a national, voluntary nonprofit organization dedicated to the prevention, treatment, and cure of hepatitis and other liver diseases through research, education, and advocacy.
  • Children's Liver Disease Research Network (ChiLDReN) offers medical and patient advocacy support with clinical sites and research labs in the U.S.
  • Children's Liver Disease Foundation (CLDF) is a UK-based charity dedicated to pediatric liver diseases.

Bylvay Instructions for Use Video

See How Bylvay Oral Pellets are Opened and Sprinkled

Watch this brief instructional video for a demonstration on how to open Bylvay Oral Pellets and mix them with a small amount of soft food.

IMPORTANT SAFETY INFORMATION AND INDICATION

IMPORTANT SAFETY INFORMATION

Speak with your healthcare provider if you experience: abdominal pain, vomiting, diarrhea, and dehydration as these have been reported with the use of Bylvay. Patients should contact their healthcare provider if they experience new onset or worsening of diarrhea.

Elevations in liver tests (for example, AST, ALT, TB) have been observed with use of Bylvay. The patient’s health care provider will obtain liver tests before starting Bylvay and periodically during treatment with Bylvay. Patients should report to their healthcare provider any symptoms of liver problems (for example, nausea, vomiting, skin or the whites of eyes turn yellow, dark or brown urine, pain on the right side of the abdomen, loss of appetite).

Bylvay may impair absorption of fat-soluble vitamins (FSV), which include vitamins A, D, E and K (vitamin K is assessed by measuring INR). The patient’s health care provider will obtain serum levels of vitamins A, D, E, and INR (for vitamin K) at baseline and periodically during treatment to assess for worsening of FSV deficiency.

Do not mix Bylvay with liquids.

Do not swallow the 200 mcg or 600 mcg capsule(s) containing Oral Pellets whole. These are intended to be opened and the contents mixed into soft food. Take Bylvay in the morning with a meal.

For patients taking bile acid binding resins, take Bylvay at least 4 hours before or 4 hours after taking a bile acid binding resin.

INDICATIONS AND USAGE

Bylvay is indicated for the treatment of pruritus in patients 3 months of age and older with progressive familial intrahepatic cholestasis (PFIC).

Limitation of Use

Bylvay may not be effective in PFIC type 2 patients with ABCB11 variants resulting in non-functional or complete absence of bile salt export pump protein (BSEP-3).

Please see full Prescribing Information.

IMPORTANT SAFETY INFORMATION AND INDICATION

IMPORTANT SAFETY INFORMATION

Speak with your healthcare provider if you experience: abdominal pain, vomiting, diarrhea, and dehydration as these have been reported with the use of Bylvay. Patients should contact their healthcare provider if they experience new onset or worsening of diarrhea.

Elevations in liver tests (for example, AST, ALT, TB) have been observed with use of Bylvay. The patient’s health care provider will obtain liver tests before starting Bylvay and periodically during treatment with Bylvay. Patients should report to their healthcare provider any symptoms of liver problems (for example, nausea, vomiting, skin or the whites of eyes turn yellow, dark or brown urine, pain on the right side of the abdomen, loss of appetite).

Bylvay may impair absorption of fat-soluble vitamins (FSV), which include vitamins A, D, E and K (vitamin K is assessed by measuring INR). The patient’s health care provider will obtain serum levels of vitamins A, D, E, and INR (for vitamin K) at baseline and periodically during treatment to assess for worsening of FSV deficiency.

Do not mix Bylvay with liquids.

Do not swallow the 200 mcg or 600 mcg capsule(s) containing Oral Pellets whole. These are intended to be opened and the contents mixed into soft food. Take Bylvay in the morning with a meal.

For patients taking bile acid binding resins, take Bylvay at least 4 hours before or 4 hours after taking a bile acid binding resin.

INDICATIONS AND USAGE

Bylvay is indicated for the treatment of pruritus in patients 3 months of age and older with progressive familial intrahepatic cholestasis (PFIC).

Limitation of Use

Bylvay may not be effective in PFIC type 2 patients with ABCB11 variants resulting in non-functional or complete absence of bile salt export pump protein (BSEP-3).

Please see full Prescribing Information.