Learning through newborn screening that your child has a rare health condition can feel overwhelming. In most cases, no other member of your family has had this condition. You may not know where to begin looking for information. After you work with your child’s doctor to determine a care plan, you may want to begin thinking about what it means to have a child living with this condition both now and in the future. The information in this section can provide resources, support, and guidance for families as they begin this process. Take a look around. We look forward to adding your story and experiences to the many voices found here.
Family Experiences - Learn from other families, in their own words, what their journey has been like after a diagnosis
Talking About a Diagnosis - Find tips for sharing information about the diagnosis of your child and things to consider prior to sharing
Advocacy and Support Groups - Connect with others to share stories, encourage each other, and advocate for a better future for all children
Find a Specialist - Get links to find specialists for your child’s medical needs
Insurance and Planning - Access important resources and read about things to consider, in terms of your child's health, from a financial perspective
Looking to the Future - Prepare for changing doctors, navigating the school system, and being ready for emergencies