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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.

International Rett Syndrome Foundation, accelerating research, empowering families.

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.

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Child Neurology Foundation, creating a community of support, logo.

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.

Girl Power 2 Cure logo.

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 logo.

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.

Northwest Rett Syndrome Association logo.

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.

Lucy and her mom are sitting down on the couch. Lucy’s mom is smiling at Lucy, who is looking off to distance.

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