You are not alone.
We know receiving a Rett syndrome diagnosis can feel overwhelming, but you are not alone on this journey. IRSF is here to guide you with resources, connections, and unwavering support every step of the way.
With us you CAN.
Receiving a diagnosis can feel like stepping into the unknown, but with the right tools and support, you can navigate this journey. By registering with IRSF, you take the first step on our Rett journey. You gain access to resources, personal guidance from our Family Empowerment team of parents and caregivers, and a compassionate community to help you meet the challenges of today and build hope for tomorrow.
When you register, we’ll send you a Rett syndrome toolkit filled with valuable resources, and a member of our Family Empowerment team will personally reach out to offer support and answer your questions. With us, you’ll find strength, connection, and the confidence to move forward.
What Comes Next: Your Rett Journey Begins
It’s natural to feel uncertain about what to do next. These steps provide practical guidance to help you begin this journey with confidence and hope.
01Register with IRSF
Registering with IRSF is your first step toward receiving the support and resources you need to advocate for your loved one with Rett. When you register, our team will reach out to answer your questions and ensure you receive our free Rett Syndrome Toolkit (for U.S. addresses). You’ll also gain access to the latest research updates, guidance to help you understand Rett syndrome, and opportunities to connect with a supportive community.
02Learn About Rett Syndrome
Learning about Rett syndrome is an important step in understanding your loved one’s journey. By building a strong foundation of knowledge, you’ll be better equipped to make informed decisions, advocate effectively, and feel more confident as you navigate this path. These pages on our website will guide you to a deeper understanding of Rett syndrome and what it means for your family.
Understanding Rett Syndrome
Gain a clearer understanding of Rett syndrome including its symptoms and how it may affect your child.
Genetics 101
Understand the basics of Rett syndrome’s genetic origins, including the MECP2 gene, explained in a way that’s easy to follow.
Glossary & FAQs
Find straightforward answers to your questions and simple explanations of terms to help make sense of this new diagnosis.
03Connect with the Rett Community
Connecting with the Rett community helps you find strength and encouragement from others who truly care. Whether through online groups, educational opportunities, or events, these connections empower you to become an advocate for your loved one and an active part of the Rett community.
PONDS Group
Join a trusted space for newly diagnosed families to connect, share experiences, and support one another.
RettEd Opportunities
Attend educational events and webinars to equip you with the knowledge and tools to navigate life with Rett.
Event Calendar
Discover upcoming events that bring families together to learn, connect, and support IRSF’s mission.
04Find a Rett Clinic
Finding the right care for your child is an important step in managing Rett syndrome. Rett clinics provide access to specialists who understand Rett and can guide you through treatment and care options. Use these tools to connect with expert care and prepare for your visits.
Managing Rett Care
Explore essential information about managing your child’s care and accessing the support they need.
Find a Clinic
Locate specialized clinics equipped to provide care for Rett syndrome near you.
Guide to Clinic Visits
Download this helpful guide to learn what to expect and how to prepare for your clinic visits.
05Explore Rett Resources
Use our website as your guide to find a variety of tools and opportunities to support your loved one and your family. These resources can help you manage daily life, plan for the future, and explore ways to contribute to advancing Rett research.
My Rett Ally Web App
Sign up for this free web app designed specifically for the Rett community to simplify, organize, and share your child’s most important medical and care information in one secure place.
Living with Rett
Explore strategies and tips for helping your loved one thrive through every stage of life.
Rett Research Ready
Prepare to participate in clinical trials with information designed to help you understand the process and what to expect.
Still have questions?
If you need more information or personalized support, we’re here to help. Reach out with your questions, and we’ll connect you with the resources and assistance you need.
The IRSF Family Empowerment Team is here for you.
Our team is dedicated to supporting your family through every step of your Rett journey. Reach out for personalized assistance, guidance, and resources tailored to your needs.