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 are not meant to 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.
Learn more at 1-833-670-6464,
Monday through Friday, 8 AM TO 8 PM ET.
Monday through Friday, 8 AM TO 8 PM ET.
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
Nursing Support & Personalized Education
Dedicated Total Care Team
Once you enroll in Chiesi Total Care, you may also connect with a Patient Education Liaison (PEL)‡§—a wound care–certified registered nurse who will check in every 2 weeks during the first 3 months of treatment and then monthly after that.
Your PEL will:
- Offer education about EB and your treatment
- Continue to check in as treatment progresses
- Help communicate updates with PantheRx Rare Pharmacy
Chiesi Total Care helps you start FILSUVEZ, streamlines access, and provides ongoing support throughout your treatment journey.
*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.
‡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 doctor.
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 1-877-914-0591.
PantheRx Rare Pharmacy
If you and your doctor decide that FILSUVEZ is the right treatment for you, your prescription will be filled by PantheRx Rare Pharmacy, a specialty pharmacy that ships the medication directly to your home each month.
PantheRx Rare Pharmacy is a part of your support team throughout treatment, helping coordinate your care, answer questions, and work with your doctor on any prescription changes or refills.
Members of your PantheRx Rare Pharmacy team include:
Your Care Coordinator, who will:
- Check in regularly before each refill to monitor your progress and set up your delivery
- Be available throughout treatment to answer general questions about insurance, shipments, or your FILSUVEZ treatment experience
Your wound care–certified registered nurse, who will:
- Be available to answer questions about how to apply FILSUVEZ
- Offer virtual counseling options for additional support
- Provide additional EB resources and education
Your pharmacist, who will:
- Be available to answer questions about FILSUVEZ
- Contact your provider if prescription changes or refills are needed
It is important that you reach out to your Care Coordinator, wound care–certified registered nurse, or pharmacist anytime you have questions, concerns, or changes to your care routine.
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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