Progress may still be possible for teens and adults
From left to right: Maddy, Caitlin, and Shannon, on DAYBUE
Adding DAYBUE to your care plan
Caring for a teen or adult with Rett syndrome means years spent building routines, coordinating care, and finding what works for your loved one. You’re their advocate, and you've worked hard to establish a routine that works for your family. It’s no small accomplishment, and it’s made all the difference in your loved one’s life.
Trying something new might seem like rocking the boat—but Rett syndrome is neurodevelopmental, not neurodegenerative. That means brain cells and connections are not destroyed and the brain is still capable of responding to treatment, which offers hope for progress regardless of severity.
Exploring treatment with DAYBUE or DAYBUE® STIX doesn't mean starting over. It's a way to build on the foundation you've already created, while opening new possibilities for your loved one.
1 in 2 people prescribed DAYBUE are age 16+
As reported by Anovo specialty pharmacy: March 27, 2026.
Hear from caregivers of teens and adults taking DAYBUE
I wanted to explore every opportunity, and age alone shouldn’t be
the reason not to try
something that might help.
— Martha, Shannon's mom
Read Shannon's story
It’s hard considering something new, especially when your child is older. I understand the temptation to keep your routine. It’s different for every family, but for us, we were excited about the potential.”
— Gina, Caitlin’s mom
Read Caitlin’s story
DAYBUE has been a really important tool in our toolbox to help symptoms of Rett syndrome. We continue treatment because we continue to see a difference in Maddy.
— Amy, Maddy’s mom
Read Maddy’s storyConsider what’s possible with DAYBUE and DAYBUE STIX
DAYBUE and DAYBUE STIX may improve the signs and symptoms of Rett syndrome and are tools that can be worked right into your current care plan. With either formulation, your doctor will ensure treatment is tailored to your loved one’s unique needs. Together, you can set goals and assess how DAYBUE is working. If you aren’t seeing progress, or it’s not meeting your loved one’s needs, you can work together to make changes.
~70% of people have continued with DAYBUE for 6 months or more.
Based on Anovo specialty pharmacy data as of 02/2026. Patients could have been on therapy for 6 months since treatment initiation from April 2025–January 2026. These data are not meant to suggest patient's compliance with DAYBUE treatment. Individual patient results may vary.
Compare DAYBUE optionsRett experts agree about DAYBUE
A survey was conducted and received responses from 25 Rett specialists, including pediatric neurologists, geneticists, pediatric nurse practitioners, and others from Rett Centers of Excellence. They all have experience with DAYBUE and arrived at a consensus about the use of DAYBUE for Rett syndrome. The majority agreed that:
- DAYBUE should be part of the standard of care for people with Rett syndrome
- DAYBUE can be given at any point throughout their lifetime (age 2+)
This survey was sponsored by Acadia. The expert consensus statements are not intended to be formal treatment guidelines and cannot replace the assessment or treatment decisions of your healthcare provider.
Build on your foundation as care needs change
Once your loved one turns 18, it's typical for them to transition from pediatric care into adult care. It's essential for this transition to go smoothly and to keep everything on track—from your routine to any type of progress you're working toward. Because of this, families start preparing and doing research when their love one may be around 16 or 17 years old.
Here are some things to consider as you transition your care plan, along with some useful resources to help get you started and organized:
Start building a care team of specialists for ages 18+. If you're not sure how to find them, referrals are always a good place to start. Your pediatric neurologist, local support groups, and even insurance company can be good resources for recommendations.
Make a plan for future care if you don’t have one already. This includes guardianship and long-term living arrangements.
Establish legal support for help setting up things like special needs trusts, wills, and power of attorney.
Learn about government financial assistance for support. Advocacy groups in your state can help you understand Medicaid and other options.
The International Rett Syndrome Foundation (IRSF) goes into deeper details about the transition of care and the steps you can take to be prepared.
Get the Transition of Care Toolkit
Other organizations have put together resources to help teens and adults with this transition:
Practical tools, checklists, and timelines to help families prepare for the move from pediatric to adult care and understand what to expect.
Neurology-focused guidance, videos, and family resources to support care planning, provider changes, and communication with the healthcare team.
Step-by-step tools for families of people with intellectual and developmental disabilities, that cover health information, medical visits, legal rights, and adult care planning.
A rare disease-focused guide to working with adult care teams, setting health goals, and navigating insurance and the healthcare system.
The links provided by Acadia Pharmaceuticals are meant for informational purposes only and are not meant to replace a physician’s medical advice.
Get help navigating options for teens and adults
Family Support Educators are available to provide more information about treatment with DAYBUE or DAYBUE STIX, including potential side effects, insurance, and other financial considerations.
Schedule a call with a Family Support Educator
