Rett Syndrome Clinic

Katie's Clinic for Rett Syndrome is one of the few centers in the United States to offer comprehensive care for patients with Rett syndrome, a rare and debilitating neurological disorder diagnosed almost exclusively in girls. The condition affects one of every 10,000 female newborns in the United States.

Rett syndrome can cause a variety of health problems, including seizures, sleep and breathing disturbances, behavioral issues, motor disabilities and communication challenges. That's why our clinic takes a team approach to patient care. Initial evaluation and ongoing treatment are led by a developmental-behavioral pediatrician, a pediatric neurologist and a pediatric nurse practitioner. A patient's care team may also include specialists in medical genetics, orthopedics, gastroenterology, physical or occupational therapy, speech therapy and nutrition. Together, we ensure that each patient receives the highest-quality care, designed just for her needs.

While there's no cure for Rett syndrome, we can do a great deal to enhance quality of life for girls and young women who have it, and to support their families. UCSF is also involved in research to improve understanding of the condition, so that we can design cutting-edge management strategies for our patients.

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    Awards & recognition

    • Ranked among the nation's best in 10 specialties

    • One of the nation's best in neurology & neurosurgery

    Plan your visit

    Preparing for your appointment

    What to Bring

    • Photo I.D.
    • Health insurance card
    • Insurance authorization, if required
    • Doctor's referral, if required
    • Recent test results related to your child's condition
    • List of medications, including dosages, plus any your child is allergic to
    • List of questions you may have
    • Device or paper for taking notes

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    Your Stay

    We offer valuable information to help you plan for your child's upcoming hospital stay. Find out about food services, family accommodations and more.

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    Your Child's Care Team

    Our doctors, nurses, child life specialists and other providers have special training to care for children. Meet your child's care team.

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    Interpreter Services & Communication Assistance

    Interpreter services in many languages and TDDs are available for families that need help communicating with care teams. Here's how to access them.

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    Support services

    Child Life Services

    Activity rooms, pet therapy and more to help kids feel at home.

    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.

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    Social Services

    Social workers ease the effect of illness, injury and hospitalization on your family with counseling and assistance to help you navigate the challenges.

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    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.

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    Art Therapy

    Art therapy helps kids and families express themselves, making it easier to cope with pediatric health issues. Group and bedside services are available.

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    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.

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    School Program

    Our schoolroom services and individual learning programs help children hospitalized at UCSF continue their education and get ready to return to school.

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    School Re-Entry Program

    After hospitalization, we help kids return to school by educating staff and students about their needs and recommending needed accommodations. Read more.

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    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.

    interpreters-2x

    Interpreter Services & Communication Assistance

    Interpreter services in many languages and TDDs are available for families that need help communicating with care teams. Here's how to access them.

    Family Resource Center

    We help families cope with the challenges of childhood illness and hospitalization in a relaxing environment where parents can get a much-needed break.

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    Parent Support Program

    Weekly activities, including knitting, scrapbooking, chair massage and more, help family caregivers get a much-needed break. Find out more.

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    Patient Relations

    Patient relations reps and nursing supervisors are here to answer questions and address concerns. Learn about your rights, how to reach us and more.

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    Spiritual Care

    Chaplains help UCSF patients, families and staff cope with the spiritual and emotional challenges of childhood illness. Learn more.

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    International Services

    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.

    Saving future lives

    500+ UCSF investigators are researching cures for hundreds of childhood and adult diseases.

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