The Guide for NF Patients and Caregivers Transitioning (PACT) to Adult Care is a resource to help patients and caregivers with the process of transitioning from pediatric to adult health care. Based upon best practice research and longitudinal experience from members of the NF Collective, this guide offers specific suggestions for precise periods of development during NF patient’s maturation. Stressing increased patient autonomy while still honoring the vital partnerships with caregivers, this guide aims to be an effective resource for the NF community to best promote a smooth transition into adulthood for all impacted. In addition to the detailed suggestion sections, this guide also provides individuals with online resources and a glossary of terms to present a most comprehensive tool that, we hope, families will find of great value.
This was a collaborative commitment of the NF Collective which is made up of seven nonprofits who are dedicated to solving specific problems in the neurofibromatosis community. Click here to download the guide and also view the inspirational webinar of young adult NF patients who shared personal experiences and advice on transitioning to adult NF care.