Dear patients,
Transitioning to adulthood is an exciting and challenging time. As someone living with a rare disease, you may look forward to greater independence but also be anxious about navigating daily life by yourself. Questions that go through your mind may include:

  • How can I ensure I continue to get appropriate medical care?
  • How does health insurance work?
  • What steps should I take to live independently?

The Global Genes toolkit, “Gaining Independence as a Young Adult with a Rare Disease,” covers these topics and more. I hope you find this resource helpful as you look ahead to life as a young adult.

Nicole Boice
Founder and CEO
Global Genes

Dear parents & caregivers,
Everything you’re doing for your child today is allowing them to mature and grow into an adult. As your child approaches adulthood, you play a key role in helping them navigate the emotional, social and medical changes.

Moving from pediatric to adult care in the health care system can be a complex process and planning should start in early teen years. A few key things to think about are: insurance coverage changes, handling decision-making and guardianship, and choosing an adult physician.

You and your child do not have to face this transition process alone. The Child Neurology Foundation’s resource page, “Transition into Adulthood,” can help you navigate some of these challenges. We hope these resources leave you informed and ready to take charge.

Amy Brin Miller, MSN, MA, PCNS-BC, ACHPN
Executive Director
Child Neurology Foundation