Managing Daily Life

It’s likely that your daily routines will change after a rare diagnosis, and how you manage the condition over time may also change. Symptoms can evolve, new standards of care may appear, social environments fluctuate, and more. It is said that the only constant is change and daily living with a rare disease includes coping and caring for your whole self— physically, mentally, emotionally, and socially.

• Caring for Someone with a Rare Disease
• Traveling with A Disability
• ADA National Network
• National Disability Navigator Resource Collaborative
• Genetics Education Materials for School Success
• The Mighty’s Toolkit for Prioritizing Your Mental Health
• Navigating Emotions: A Guide for Teenagers with Rare Disease
• National Suicide Prevention Lifeline
• Emergency Planning