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Common signs of rare disease

The first years of a child’s life have important implications for their future health and development. While the experiences of all children vary, there are certain milestones that experts believe characterize normal development during this time. If any of the below describe your child’s behavior and development, let RareNavigator help guide you to find answers about your child’s health.

Common signs of rare disease

Your child has stopped growing or developing as expected.

Your child is exhibiting new symptoms that emerge over time.

Your child looks or acts differently from other members of the family.

Your child is experiencing multiple symptoms that do not clearly fit within any common diagnosis.

There are other family members with similar uncommon symptoms.

Your child has been to the doctor (pediatrician, emergency room, etc.) multiple times in the past several months to deal with similar recurring symptoms.

Your child has been referred to multiple specialists and/or has tried several recommended treatments (including surgeries) that have not worked as predicted.

Your child has been diagnosed with a moderate, severe or profound developmental delay.

Your child has one or more major abnormality of the structure or function of their organs that has been present from birth and requires ongoing medical or surgical treatment.

RareNavigator is not intended to be diagnostic or offer treatment plans, nor is it intended to replace the guidance of a healthcare professional.

The common signs were developed by the Global Commission membership for its 2019 Global Commission Year One Report. Additional signs were added in 2020 by the Global Commission membership.

Questions to ask your child's doctor

Need help knowing what questions to ask your child's doctor? Click here to help us build a custom discussion guide for you.

Development and symptom trackers

It is important to keep your child’s medical data safe, organized, and available to you whenever you need it. There are safe, online tools available to help you do this, such as CDC's Milestone Tracker App.

Find a rare disease specialist

Whether you are looking for a specialty treatment center or a healthcare professional with experience in a specific condition, there are online tools that can help you. The Genetic and Rare Disease Information Center can provide suggestions if you need help locating an expert.