Adult C.A.R.E. Binder

Long-Term Care Planning for Adults with Lennox-Gastaut Syndrome (LGS)

Planning for care for your adult loved one with LGS may feel daunting at times. If you have feelings of concern or anxiety as you prepare for your loved one’s future, rest assured, this is normal.

Watch: Preparing for Transition & Understanding the Unique Needs of Adults with LGS

Adult C.A.R.E Binders

The C.A.R.E. (Caring for Adults with Rare Epilepsy) Guide is an interactive, fillable PDF resource designed to assist families in planning long-term adult care for individuals with Lennox-Gastaut Syndrome (LGS).

This comprehensive tool addresses the challenges families face as their loved ones transition from pediatric to adult care settings. The guide covers key considerations, preparation steps, and available support resources for this important life transition. While not exhaustive, it provides valuable insights into:

  1. Essential factors to consider during the transition process
  2. Necessary preparations for adult care
  3. Available support services and resources

By utilizing this guide, families can navigate the complexities of adult care planning with greater confidence and clarity, ensuring a smoother transition for their loved ones with LGS.

DOWNLOAD THE C.A.R.E. BINDER

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C.A.R.E. Binder Blog

  • Getting Started in Adolescence, Ages 13-16
  • Preparing for the Transition to Adulthood, Ages 17-18 – Coming Soon
  • Aging Out of School into Daily Life, Ages 19-22 – Coming Soon
  • Transition of Care for an Aging Caregiver – Coming Soon

Visit the C.A.R.E. Binder Blog

VIPrareCARE.com and the C.A.R.E. Binder were proudly developed in collaboration with the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome Foundation, TSC Alliance and other organizations who support families like yours and was made possible through UCB funding and partnership.

 

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Updated 05/12/25 (AM)

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