Healthcare and medical transitions may vary by disease and the type of care required. Continuing proper care is critical to your health or the health of those you may care for who live with a rare disease. Preparing early can reduce challenges later in life.

Additional Resources

What is a healthcare transition for someone living with a rare disease?

An adjustment, change or decision that someone makes about their health needs or the health needs of a dependent who lives with a rare disease.

Common healthcare transitions are:

  • Moving from a pediatrician to an adult healthcare provider
  • A teen or young adult gradually taking over their own care, if possible
  • Learning to use assistive equipment

Why should I be ready?

  • Health needs may change with age. As you or your dependent get older, there will be different choices and circumstances that require unique care choices
  • Young adults may need to take care of themselves and manage their medication and healthcare independently
  • Proper healthcare transitions can lead to better health long-term and greater quality of life while living with and managing a rare disease

Who can help me?

  • Your physicians and healthcare providers
  • Your advocacy organization
  • Other community members

When do I need to start?

You may want to consider beginning to plan for healthcare transitions during your child’s adolescence, and prior to when care shifts from pediatric to adult healthcare. You know the needs of your child and family best, so this is unique for everyone.

These resources from healthcare and advocacy organizations will help you by prepared for healthcare transitions.

Child Neurology Foundation

Utilize the 8 Common Principles to Assist with the Transition of Care to help support youth, families, and child neurology teams in the medical transition from pediatric to adult healthcare systems. Whether you are someone living with a rare disease, an advocate, a provider or a supporter, visit the foundation’s website to access programs and tools specific to your needs.

American Academy of Pediatrics

Utilize this clinical report, Supporting the Healthcare Transition from Adolescence to Adulthood in the Medical Home, that provides expert consensus on how to transition people from pediatric to adult healthcare to ensure uninterrupted care.

ACP

Utilize the ACP Pediatric to Adult Care Transitions Toolkit for critical resources for the young adult in transition and learn optimal self-care as an emerging adult. There are transition tools available for a variety of conditions ranging from intellectual/developmental disabilities to hemophilia, lupus, sickle cell disease, and Turner syndrome.

Got Transition

Utilize resources from the Got Transition/Center for Healthcare Transition Improvement,a cooperative agreement between the Maternal and Child Health Bureau and the National Alliance to Advance Adolescent Health. Got Transitions offers tools for healthcare providers, families, and researchers. Check out their Youth & Families page for user-friendly information about healthcare transitions including answers to common questions. They also have a downloadable resource called Turning 18: What it Means for Your Health that discusses the medical and legal realities of turning 18.

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