Resources
Being a parent or caregiver for Rett syndrome can sometimes feel like being in an obstacle course, where you’re constantly overcoming hurdles.
Whether you’re just learning about Rett or further along in your child’s journey, here are some helpful resources for you and your family. These committed organizations can offer more information about Rett syndrome.
The International Rett Syndrome Foundation (IRSF) is laser-focused on creating a world without Rett syndrome.
For nearly 40 years, IRSF has fueled life-changing advancements in research toward treatments, including cures. As the organization relentlessly pursues foundational research and breakthrough discoveries in Rett syndrome, IRSF helps families thrive through resources, advocacy, and empowerment.
IRSF Resource Library
Explore the IRSF Resource Library, a comprehensive hub offering tools, information, and guidance designed to empower and assist families navigating the complexities of life with Rett syndrome.
Available resources include:
Comprehensive Care Guidelines
A guide to suggested visit schedules, Rett concerns, and timelines for follow-up appointments to share with your doctor
Rett Syndrome Handbook
A handbook detailing everything you need to know about Rett syndrome
Communication Guidelines
Guidelines with practical tips and strategies to help with communication for anyone who interacts or provides care to your child with Rett syndrome
Transition of Care Toolkit
A toolkit designed to help caregivers navigate through the varied needs of an aging loved one with Rett
IRSF Centers of Excellence/Rett clinics
International Rett Syndrome Foundation (IRSF)-designated Centers of Excellence offer specialized care for the Rett syndrome community, including:
- A physician director with expertise in Rett syndrome care
- Healthcare services that meet the unique needs of individuals with Rett syndrome
- Involvement in clinical trials
- Contribution to the IRSF Rett Syndrome Registry to increase understanding of Rett syndrome
Find more resources from IRSF
To improve the care experiences of children living with neurologic conditions by building meaningful connections between families and medical professionals, serving as a collaborative center of education, support, and care advancement.
The mission of nonprofit organization Girl Power 2 Cure (GP2C) is to empower and support families affected by Rett syndrome, to educate and enrich their lives, and those who teach and support them, and to help eradicate the disorder through research-targeted donor outreach. GP2C inspires action, supports families, educates and raises awareness, and funds research for Rett Syndrome.
Rett Syndrome Angels is an organization of parents, family, and friends committed to supporting those living with Rett Syndrome in the New England area. Rett Syndrome Angels provides services, education, resources, awareness, engagement and raises funds for local Rett Syndrome research, treatments, and a cure.
The Northwest Rett Syndrome Association (NWRSA) is an Oregon-based 501(c)3, founded by a group of parents and professionals who recognized the need for a strong regional support group.
Members are individuals, families, friends, and professionals impacted by Rett Syndrome across the Pacific Northwest, including Alaska, Idaho, Oregon, Washington, and British Columbia. NWRSA offers connection, education, and advocacy for individuals, families, and communities impacted by Rett Syndrome.
National Organization for Rare Disorders (NORD)
Patient advocacy organization dedicated to individuals with rare diseases, including Rett.
Lucy Revealed: Advice for Newly Diagnosed
Watch Anna and Matthew, Lucy's parents, as they give advice to other parents navigating a new Rett syndrome diagnosis.
