Rare disorders affect only a small number of individuals. It may be daunting for family caregivers to try to find information that’s scarce. There are many websites for health conditions, but not a lot that cover rare conditions.
Where is reputable information available?
A Note on Genetics
Family caregivers won’t feel so helpless or hopeless if they find out information on their child’s condition and learn how to handle it. If parents know what to expect, they can take better care of their child, resulting in better health outcomes for their child.