Pediatric Rett Syndrome Care
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Why choose UCSF Benioff Children's Hospitals for Rett syndrome care?
We are one of the few U.S. programs offering comprehensive Rett syndrome care. Here, specialists, therapies and family support come together in one coordinated experience.
Our team considers your child's medical needs, daily life and long-term goals when planning treatment. The International Rett Syndrome Foundation recognizes us as a Center of Excellence.
Help for your child and family extends beyond medical appointments. Your family receives guidance on school support, therapies, equipment needs, community resources and coordination with your child's local doctors.
Our program grew from a family's vision for care that supports the whole child. That spirit continues to guide our work. We also help families understand new treatment options and research opportunities. Our specialists can discuss targeted therapies, clinical trials and care plans as your child's needs change over time.
Why choose UCSF Benioff Children's Hospitals for Rett syndrome care?
We are one of the few U.S. programs offering comprehensive Rett syndrome care. Here, specialists, therapies and family support come together in one coordinated experience.
Our team considers your child's medical needs, daily life and long-term goals when planning treatment. The International Rett Syndrome Foundation recognizes us as a Center of Excellence.
Help for your child and family extends beyond medical appointments. Your family receives guidance on school support, therapies, equipment needs, community resources and coordination with your child's local doctors.
Our program grew from a family's vision for care that supports the whole child. That spirit continues to guide our work. We also help families understand new treatment options and research opportunities. Our specialists can discuss targeted therapies, clinical trials and care plans as your child's needs change over time.
Visits shaped around your child
We carefully plan your visit so your family spends more time with the specialists who can help most during that appointment.Rett-specific therapy guidance
Our team helps families support movement, communication, feeding and daily care needs.Community built into care
You can find support by connecting and sharing experiences with other families who understand the challenges of Rett syndrome.Care through adulthood
As your child grows and their needs change, they continue to receive comprehensive, skilled care from our team of experts.
Rett syndrome care built around daily life
Rett syndrome is a neurological disorder that can affect many parts of your child's health and development. Our team considers your child's medical needs, therapies and family priorities when planning treatment.
We focus on practical guidance your family can use between visits. That may include:
Communication tools
Feeding strategies
Home routines
Mobility support
School planning
Rett syndrome specialists
Most children with Rett syndrome need care from several specialists. We bring together experts who understand how Rett syndrome affects the whole body and can help families plan for movement, communication, feeding and daily care needs.
Your child may see providers in cardiology, gastroenterology, genetics, neurology, orthopedic surgery and pulmonology. The team may also draw on nutrition, rehabilitation, therapy, social work and case management expertise. Together, these providers help your child with:
Constipation, reflux and swallowing problems
Scoliosis and changes in muscle tone
Nutrition and feeding concerns
Physical therapy and occupational therapy
Speech therapy and communication devices
Medical equipment and mobility needs
Treatment options and research
Rett syndrome has no cure, but treatments and therapies can improve quality of life. Our specialists help you understand available options and what may fit your child, including:
Anti-seizure medications for epilepsy
Medicines for reflux, constipation or other symptoms
Daybue (trofinetide), the first FDA-approved treatment for Rett syndrome
Therapy recommendations
Clinical trial information, when appropriate
We also participate in Rett syndrome research, including studies of emerging therapies such as gene therapy. Our team can help eligible families learn about research opportunities.
Planning for each stage of life
As children with Rett syndrome grow, their needs may change. We can continue care as your family plans for each stage.
Our team helps families think through school support, caregiving needs, conservatorship, adult services and long-term care planning. We focus on your child's comfort, abilities and quality of life.
Care coordination with your local team
Many families who come to us also have doctors and therapists closer to home. We work with those providers so your child can get support between visits.
Our team may share recommendations with your child's local neurologist, primary care doctor, gastroenterologist, therapist or school team. This coordination helps everyone work from the same Rett-specific care plan.
Providers
Jennifer Martelle Tu, MD, PhD
Pediatric Neurology
Joseph Shieh, MD, PhD
Medical Genetics and Genomics
Ishaan Swarup, MD
Orthopedic Surgery • Pediatric Orthopedic Surgery
Awards & achievements
One of the nation's best for neurology & neurosurgery
Designated a Center of Excellence for Rett syndrome
Ranked among the nation's best in 11 specialties
Related conditions & treatments
Conditions
Treatments
- Clinical Trials
- Gene Therapy
- Physical Therapy
- Speech Therapy
Clinical trials
Rett Syndrome RegistryOpens in a new window
The Rett Syndrome Registry is a longitudinal observational study of individuals with MECP2 mutations and a diagnosis of Rett syndrome. Designed together with the IRSF Rett Syndrome Center of Excellence Network medical directors, this study collects data on the signs and symptoms of Rett syndrome as reported by the Rett syndrome experts and by the caregivers of individuals with Rett syndrome...
Recommended reading
First steps after a Rett syndrome diagnosis
A Rett syndrome diagnosis can be overwhelming. We guide you through first steps, such as finding the right care team and services for your child.New therapy improves lives of girls and women with Rett syndromeOpens in a new window
Meet a family using Daybue, the first FDA-approved Rett syndrome treatment, and learn how UCSF helped study the therapy.
Support services
Child Life
Certified child life specialists ease the stress and anxiety of childhood illness through therapeutic play, schooling and family-focused support.
Family Amenities
Family-friendly amenities help you relax and take care of yourself while staying close to your child. We offer lounges, kitchens, showers, breastfeeding rooms and more.
Social Services at UCSF Benioff Children's Hospitals
Social workers ease the effect of illness, injury and hospitalization on your family with counseling and assistance to help you navigate the challenges.
Activity Rooms
Activity rooms offer a relaxed environment for children of all ages. Features include a playroom, digital arts studio and teen lounge. Find out more.
Pediatric Art Therapy Program
Art therapy helps kids and families express themselves, making it easier to cope with pediatric health issues. Group and bedside services are available.
Pediatric Music Therapy Program
Board-certified music therapists help kids cope with illness and the feelings that come with it. Find out about group activities and bedside therapy.
School Program for Hospitalized Children
Our schoolroom services and individual learning programs help children hospitalized at UCSF continue their education and get ready to return to school.
School Re-Entry Program
We help kids return to school after hospitalization by educating staff and students about their needs and recommending needed accommodations. Read more.
Individual Playtime & Instruction
If your child can't be around other kids for medical reasons, you can sign up for private sessions in our activity and school rooms. Find out how.
Interpreter Services & Communication Assistance at UCSF Benioff Children's Hospitals
Interpreter services in many languages and TDDs are available for families that need help communicating with care teams. Here's how to access them.
Parent Support Program
Weekly activities, including knitting, scrapbooking, chair massage and more, help family caregivers get a much-needed break. Find out more.
Patient Relations at UCSF Benioff Children's Hospitals
Patient relations reps and nursing supervisors are here to answer questions and address concerns. Learn about your rights, how to reach us and more.
Spiritual Care at UCSF Benioff Children's Hospitals
Chaplains help UCSF patients, families and staff cope with the spiritual and emotional challenges of childhood illness. Learn more.
International Services at UCSF Benioff Children's Hospitals
If you're coming to UCSF from outside the U.S., we coordinate your child's appointments and provide other helpful services. Here's how to get started.