Managing Rett Care

Managing Rett syndrome involves a personalized approach that addresses the specific needs of each individual. Explore essential resources and guidelines designed to support caregivers and families in effectively navigating the complexities of Rett care.

Comprehensive Care Guidelines

The best care plan isn’t a one-size-fits-all approach.

Each individual with Rett syndrome has distinct needs that evolve over time. Collaborative care among a diverse team of specialists is essential to address the varying aspects of the condition.

Developed in collaboration with Rett syndrome experts throughout the U.S., the Rett Syndrome: Comprehensive Care Guidelines and Quick Reference Guide are free resources, intended to be used to support a meaningful partnership between caregivers and the physicians, nurses, and therapists who are involved in the care of an individual with Rett syndrome.

Specialties Involved in Rett Care

Managing Rett syndrome requires a team of specialists working together to address the unique needs of each individual. Collaboration among these experts ensures a comprehensive approach to care, supporting every aspect of health and well-being.

Primary Care Physician

Coordinates overall health care, monitors development, and provides preventive care while addressing general health concerns related to Rett syndrome.

Pediatrician

Focuses on the growth and development of children, ensuring they receive appropriate vaccinations and routine screenings, and offers guidance on developmental milestones.

Neurologist

Specializes in diagnosing and treating neurological issues associated with Rett syndrome, such as seizures and cognitive challenges.

Gastroenterologist

Addresses gastrointestinal issues, which can be common in individuals with Rett syndrome, helping to manage nutrition and digestive health.

Rehabilitation Specialist

Addresses tone management, therapies, and equipment needs.

Cardiologist

Monitors heart health, assessing any potential cardiac issues that may arise.

Orthopedist

Provides care for musculoskeletal issues, ensuring proper alignment and function to support mobility.

Occupational Therapist

Works on enhancing daily living skills and promoting independence through tailored therapeutic interventions.

Speech Therapist

Focuses on communication strategies, helping individuals develop or enhance their ability to express needs and interact with others.

Physical Therapist

Aims to improve mobility and physical function through tailored exercises and interventions.

Dietician

Offers nutrition counseling to address dietary needs and manage feeding challenges, ensuring optimal growth and health.

Geneticist and Genetic Counseler

Specializes in discussing how specific genetic changes cause Rett Syndrome and reviews related concerns.

Behavioral Health Specialist

Addresses sleep, mood and behavior. May be offered by other specialists or the providers listed above.

Clinic Coordinator, Social Worker, and/or Case Manager

Addresses parent support in finding and providing letters of medical necessity, transition to adult providers, respite care providers, and in-home services including nursing and palliative care.

Expert Care

Start the Conversation

Connecting with a specialized clinic can provide valuable insights and support for managing Rett syndrome. Our Center of Excellence clinic network brings this collaborative care model to families, offering guidance from Rett experts and specialized care in one place to help navigate every step of the journey.

Working with a knowledgeable care team is essential for developing an effective care plan.

Treatment

DAYBUE™ (trofinetide)

DAYBUE™ (trofinetide) is the first and only FDA-approved treatment for Rett syndrome, indicated for adults and pediatric patients 2 years of age and older. It is a prescription, oral medication, currently available in the United States and Canada. Over 1,500 people living with Rett syndrome have started DAYBUE—including people with a variety of Rett symptoms, adults, girls, and boys.

In clinical trials, caregivers and clinicians observed significant improvement in the signs and symptoms of Rett syndrome versus placebo at 12 weeks. Patients also experienced side effects including diarrhea, vomiting, and weight loss. Acadia Pharmaceuticals, the makers of DAYBUE, offer many resources for patients and HCPs considering DAYBUE.

care resource

My Rett Ally

Made exclusively for the Rett syndrome community, My Rett Ally, powered by mejo, is a better way for caregivers to simplify, organize, and share an individual’s most important medical and care information all in one web app. Key features of this free resource include:

Organized medical journal: the most important medical information in one place, organized, and ready to share.
Key symptom tracking: Personalized tracking categories specifically for Rett symptoms.
Document Storage: Upload key documents and view IRSF preloaded resources.

The information added to My Rett Ally is private, but the web app allows caregivers to safely share access to an individual’s medical journal and tracker quickly when needed.

Care Resource

Maximizing Communication Potential

People often underestimate the communication capabilities of individuals with Rett syndrome. The Rett Syndrome Communication Guidelines provide essential strategies to enhance communication for individuals and their care teams. These guidelines and the accompanying continuing education program for providers give parents, caregivers, and educators the power to create inclusive environments where every child’s voice is valued.

IRSF Rett Resource Hub

Researchers

Harvard Brain Tissue Resource Center (HBTRC)

The Harvard Brain Tissue Resource Center (HBTRC), now a part of the NIH NeuroBio Bank, provides access to brain tissue donated by the families of deceased individuals with Rett syndrome for research.

Families

Get Involved Toolkit

Learn about the opportunities to fundraise, advocate, volunteer, and more.

Clinicians, Families

CE Program for Communication Specialists

This flyer outlines IRSF’s continuing education program in communications geared towards communication professionals. Families should share this flyer with anyone on their care team interested in learning more about effective communication with an individual with Rett syndrome.

Families

Guide to Clinic Visits

A physician who truly understands Rett syndrome can make a big difference in your loved one’s life. Expert Rett providers can help direct your child’s healthcare, answer questions, and provide resources for Rett syndrome. Most clinics recommend annual visits to check in with your child and get to know your family better. Use this guide to prepare for these visits whether you are looking to visit a Rett clinic for the first time or have been taking your child to Rett clinic appointments for years.

Families

State Proclamation Resources

October is Rett Syndrome Awareness Month and governors in several states honor our effort by signing proclamations declaring October to be Rett Syndrome Awareness Month in their states. These documents were developed to help you procure proclamations in your state.

Families

An Educational Guide to Rett Syndrome (Advocacy)

Share this document with elected officials and more to advocate and raise awareness for Rett syndrome.

Families

Guide to Advocating for Rett Syndrome

Learn how to effectively advocate for Rett syndrome by sharing your story with policymakers.

Families

Raising A Hand

Three beautifully bound collections of over 200 photos of musicians from around the world who share about themselves and gave their support to help raise funds for research to cure Rett syndrome.

Families

Billy Footwear

Fashion meets function. Billy Footwear is a favorite for our families because of the ease of use for their children and adults. Use this link and receive 10% of your entire order and IRSF will receive 5% toward our mission.

Find a Clinic Near You

Connecting with a clinic designated as a Center of Excellence can ensure that individuals receive the highest quality of care tailored to their needs. These clinics specialize in Rett syndrome, providing comprehensive resources and support.