Talk With Someone Who’s Been There
Connect with a patient or caregiver who has personal experience with itch associated with Progressive Familial Intrahepatic Cholestasis (PFIC) or Alagille syndrome (ALGS) and with BYLVAY (odevixibat), and who can share their own journey and perspective.
* Mentors are not healthcare providers and cannot give medical advice. Your doctor is always the best person to answer medical questions or discuss treatment decisions.
You're not alone in your journey
When you’re facing unfamiliar decisions, it can help to hear from someone who understands what the process felt like for them. A mentor can share their personal story and what they learned along the way, offering perspective from someone who has been through a similar experience.
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A simple way to hear from someone who’s been there
The BYLVAY Mentor Program, offered through the PatientPartner platform and sponsored by Ipsen, connects individuals and caregivers with experience in PFIC or ALGS and BYLVAY to those looking for real-life perspective. Mentors share what their journey has looked like, from day-to-day routines to what they learned along the way.
Connect With Someone
Chat one-on-one with a mentor who has lived through PFIC or ALGS themselves or cared for someone who has. They’ve experienced many of the same challenges and can share what the journey felt like from their perspective.
Ask Questions
This is a chance to ask questions about their personal experience, such as how they approached conversations with their care team or what they learned along the way. Mentors share their own lived experience with itch related to PFIC or ALGS and BYLVAY; they do not provide medical advice.
Hear Helpful Insights
Mentors can talk about what helped them incorporate BYLVAY into daily life, how they managed emotional moments during the journey, and what made them feel more prepared as they moved forward.
Find my mentor
*Mentors share their personal experiences and are compensated for their time participating in the program. BYLVAY Mentors do not provide medical advice. Please talk to your healthcare provider about any questions related to your health or treatment.
Real People, Real Connection
Hear how mentors made an impact
Hearing someone else’s story made me feel seen. It was the first time I didn’t feel alone in what I was going through.
Olivia
Rochester, MN
It was incredibly helpful to hear real experiences from someone who had already faced the same worries I was struggling with.
Troy
Chicago, IL
*Quotes are from real PatientPartner mentors and mentees. All images are actor portrayals. Experiences are not specific to the BYLVAY Mentor Program.
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How it works
A quick overview of what to expect.
Step 1
Tell us a little about your journey
Fill out a brief form so we can understand your experience with PFIC or ALGS and find the right mentor for you.
Step 2
Get matched with a mentor
We’ll connect you with a mentor whose journey aligns with yours and who has experience with BYLVAY.
Step 3
Start the conversation
Start a one-on-one conversation on the platform with your mentor to learn about their personal experience, including what daily life looked like for them and what they learned along the way.
Bridging the Gap in Patient Connections
IPSEN has teamed up with PatientPartner to ensure every patient has access to meaningful peer connections. Mentors are real BYLVAY patients or caregivers who want to help others feel empowered during their ALGS or PFIC journey. Mentors participate in the program to share their personal experiences and are compensated for their time.
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