FILSUVEZ Friends
Connect with FILSUVEZ Friends
FILSUVEZ Friends is a mentorship program that was designed to help you share tips, find encouragement, and build real connections with others who understand what it’s like living with dystrophic or junctional epidermolysis bullosa.
This program is an opportunity to build meaningful relationships and feel more confident as you navigate life with EB and decide whether FILSUVEZ is right for you.
This program is an opportunity to build meaningful relationships and feel more confident as you navigate life with EB and decide whether FILSUVEZ is right for you.
Elizabeth, FILSUVEZ caregiver, Henry, FILSUVEZ patient, and Sarah, FILSUVEZ caregiver, are paid spokespeople for Chiesi. These are their personal experiences. Your experience may differ.
Participants must be at least 18 years of age or accompanied by a parent or guardian and reside in the United States. FILSUVEZ Friends patients and caregivers do not provide medical advice and only share their personal experiences. Conversations must not take the place of discussions with doctors.
See how you can get involved
Chiesi Total Care
To be eligible, your doctor must first submit a prescription for FILSUVEZ to the specialty pharmacy
Chiesi Total CareSM simplifies access and support for FILSUVEZ
FILSUVEZ comes with a built-in support system that you can count on, so you can spend less time managing care and more time living your life.
Get in touch with a Chiesi Total Care team member
Phone: 1-800-784-5840
Fax: 1-877-435-2524
Chiesi Total Care is a comprehensive support program that helps you every step of the way, assisting with:
Insurance Consultation and Financial Support*†
Treatment Support & Logistics Coordination
Dedicated Wound Care Education
Access to a Comprehensive Support Team
When you enroll in Chiesi Total Care, you will have access to a dedicated team available to support you throughout your treatment journey. Your Patient Services Manager (PSM)‡§ is your primary point of contact for insurance, treatment access, and support services. Your Patient Education Liaison (PEL)¶‖ is a wound care–certified specialist who provides education and ongoing guidance throughout your FILSUVEZ journey.
Your PSM can help:
- Answer questions about insurance coverage and treatment access
- Connect you with available support programs and resources
- Coordinate with your PEL and Specialty Pharmacy
- Get you the support you need along the way
Your PEL can help:
- Check in every two weeks during the first three months of treatment, then follow up at a cadence that works best for you and your care
- Provide education about EB and FILSUVEZ throughout your treatment journey
- Work closely with your PSM to help support your treatment experience
For any questions or support throughout your treatment journey, start with your PSM.
*Patients participating in a government healthcare plan are not eligible for financial assistance programs.
†Please refer to the full Terms and Conditions for eligibility requirements.
‡PSMs are employed by Chiesi USA, Inc.
§PSMs are not healthcare providers and are not part of your medical team. They cannot give medical care or advice. All decisions about your treatment should be made by you and your healthcare provider.
¶PELs are employed by Chiesi USA, Inc.
‖PELs are not healthcare providers and are not part of your medical team. They cannot give medical care or advice. All decisions about your treatment should be made by you and your healthcare provider.
Simply fill out the Patient Enrollment and Consent Form to get started
If you download and print the form, fax the completed form to Chiesi Total Care at 1-877-435-2524.
Educational Videos
Watch a wound care–certified registered nurse from PantheRx Rare Pharmacy explain what you and your loved ones should know about treatment with FILSUVEZ
Swipe to see content
Testimonial Videos
Hear real patient and caregiver experiences with FILSUVEZ
Swipe to see content
Downloadable Resources
Use this guide to learn more about FILSUVEZ and what it has to offer
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Find encouraging support for your loved one living with dystrophic or junctional epidermolysis bullosa
EB Advocacy Groups
Find a helpful support network
Living with EB often means managing many aspects of care on your own. EB advocacy organizations offer resources and information that may help you learn more about EB and connect with others in the community.
This organization supports people affected by EB through education, advocacy, and community resources.
This organization funds research to treat and cure EB and provides educational resources, events, and opportunities to connect with the EB community.
Inspired by Hallie’s story with EB, this organization raises awareness of EB, supports affected families, and brings hope through community, advocacy, and efforts to advance research toward better treatments and a cure.
Camp Wonder® is a summer camp for children ages 6–16 with chronic skin conditions, offering a safe, supportive, and fully funded experience where kids can simply be kids.
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