For Families/Newly Diagnosed
Together, we can create a powerful force for progress, transforming CYFIP2 EIEE into a recognized healthcare priority.
We are continuously working to provide families with resources, personal support, and opportunities to influence medical advancements, ensuring that no family feels isolated in their journey.
Get started below and be sure to check here for updates!
Share Your Story
By sharing your story, you can inspire awareness and drive critical progress in research and support networks. Sharing your experiences expresses the unique challenges of living with this rare condition, helping others understand the need for medical advancements and compassionate care. Your voice can unite a community, foster connections with other families, and amplify efforts to secure funding and advocacy for better treatments. Personal stories also offer hope to newly diagnosed families, showing that they are not alone in their journey.