Resources and patient support
Kristine and Kim, Family Access Managers
Downloadable resources
Download the following resources for detailed information about DAYBUE™ (trofinetide).
Considering Treatment with DAYBUE:
DAYBUE Treatment Discussion Guide
In this guide you’ll find helpful information about DAYBUE and some questions to help you prepare for a conversation with your child’s doctor
DAYBUE Overview Brochure
The DAYBUE overview brochure provides information about treatment with DAYBUE.
Starting Treatment with DAYBUE:
Guide to Getting Started with DAYBUE
This guide can help you and your child prepare for and get the most out of treatment with DAYBUE.
DAYBUE Daily Treatment Journal
Tracking your child’s treatment journey in this journal can help you identify changes and will help you and your care team stay informed.
Support Information from Acadia Connect:
Steps to Obtaining DAYBUE
Download this 1-page roadmap to help guide you through each step of the DAYBUE journey.
Acadia Connect Overview
Download the overview brochure of Acadia Connect, including support offerings and resources.
DAYBUE Packaging Materials Recycle Program
We are pleased to offer a recycling service to help you dispose of the DAYBUE packaging materials that come with your medicine.
Kate, age 9, living with Rett syndrome
See what DAYBUE helped spark in Kate
Learn more about Kate's experience with DAYBUE.
Advocacy & Support Groups
Build a connection
Advocacy groups help connect patients and families to education, research, support services, and the broader Rett community. Here are just a few of the organizations that work to raise both awareness of Rett syndrome and funds directed toward research while providing programs and information to help individuals with Rett syndrome.
Girl Power 2 Cure
The mission of nonprofit organization Girl Power 2 Cure is to empower and support families affected by Rett syndrome, to educate and enrich their lives, and those who teach and support them, and to help eradicate the disorder through research-targeted donor outreach. GP2C inspires action, supports families, educates and raises awareness, and funds research for Rett syndrome.
Northwest Rett Association
The Northwest Rett Syndrome Association is an Oregon-based 501(c)3, founded by a group of parents and professionals who recognized the need for a strong regional support group. Members are individuals, families, friends, and professionals impacted by Rett Syndrome across the Pacific Northwest, including Alaska, Idaho, Oregon, Washington, and British Columbia. NWRSA offers connection, education, and advocacy for individuals, families, and communities impacted by Rett syndrome.
Acadia Connect
Support by your side
Once your child is prescribed DAYBUE, you’ll have access to Acadia Connect, a patient and family support program that connects you and your family with educational support and resources throughout your DAYBUE treatment journey.
Our team at Acadia Connect will help you with:
Understanding and verifying insurance coverage
Information on appropriate financial assistance options
Support and education throughout the DAYBUE treatment journey
Acadia Connect consists of a dedicated, experienced support team:
Nurse Care Coordinator
Your Nurse Care Coordinator is dedicated to helping your child get their DAYBUE treatment and providing support whenever you need it.
Works with your doctor’s staff to help you obtain DAYBUE coverage
Provides information on appropriate financial assistance options
Coordinates with you and AnovoRx Specialty Pharmacy for timely delivery of DAYBUE
Offers support and education throughout the DAYBUE treatment journey
Family Access Manager
Your Family Access Manager is dedicated to providing ongoing support and product education for DAYBUE treatment.
Helps you understand your insurance coverage
Provides in-person or virtual visits to provide DAYBUE product education
Offers support and education about potential side effects throughout the DAYBUE treatment journey
Shares tools and resources with you and your child who is prescribed DAYBUE
Acadia Connect partners with AnovoRx Specialty Pharmacy
AnovoRx will process and fill DAYBUE prescriptions and have clinical pharmacists available 24/7, to:
Answer questions and offer treatment support for DAYBUE
Provide information about potential side effects
Offer clinical recommendations (when appropriate)
Questions about delivery?
Contact Acadia Connect for support at 1-844-737-2223, Monday–Friday, 8:00
The Acadia Connect team is here to support you through the journey ahead.
The Acadia Connect team is here to support you through the journey ahead.
Acadia Connect Family Access Managers
Acadia Connect Family Access Managers
Your Acadia Connect team is here to support you and your loved one. To learn more, visit AcadiaConnect.com or call 1-844-737-2223, Monday to Friday, 8:00
Spanish-speaking Nurse Care Coordinators, Family Access Managers, and interpreters for other languages are available.
Steps to Obtaining DAYBUE
Download this 1-page roadmap to help guide you through each step of the DAYBUE journey.
Acadia Connect Overview
Download the overview brochure of Acadia Connect, including support offerings and resources.
Register for updates
Sign up to receive the latest information about treatment with DAYBUE and new resources.
