As a parent and caregiver, there may be specific hurdles you face, and finding effective ways to navigate them is crucial for your well-being.
This glossary aims to demystify some of the most common terms to understand better and manage your child's condition.
How raising awareness impact patients' lives
Having a child with a rare disorder can be difficult, learn strategies to enhance your day-to-day management of stress, challenges, and support.
Learn more about the importance of mental health when caring for your child with a rare or undiagnosed condition.
As your child approaches adulthood, here's what you can expect and how to support them during this transition.
Tips and resources on how to steer through the intricacies of medical insurance
Strategies and resources to help families navigate the financial challenges
Study Links Inherited Mutations to Okur-Chung Neurodevelopmental Syndrome