Recently Diagnosed

Welcome to the MINPP1 community. We have been in your shoes as a newly diagnosed family. We understand that this diagnosis can bring a world of uncertainty, questions, or fears. Nothing can prepare a parent to receive a genetic disease diagnosis. Please know that you are not alone on this journey. We like to share a few things you should know.

• No one can tell you what the future holds for your child. While there are common symptoms that our children experience, no two children with MINPP1 deficiency are exactly alike. Even those with the same genetic change. Your child will write their own story.
• As parents, before reading any online article, it is crucial to understand that your child's gene mutation location and type will influence their own phenotype. Within the same genetic family, many phenotypes and scenarios are possible. Never focus on prognosis, always focus on getting an accurate diagnosis

Learn more about MINPP1 and how it may affect your child: Understanding MINPP1