The Guide for NF Patients and Caregivers Transitioning (PACT) to Adult Care
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.
NF Collective Webinar: Transitioning to Adult NF Care
On February 24, 2021 the NF Collective hosted an inspirational webinar of young adult NF patients who shared personal experiences and advice on transitioning to adult NF care. This event was held in conjunction with the release of “The Guide for NF Patients and Caregivers Transitioning (PACT) to Adult Care”, a new resource for the NF community put together by the NF Collective. In this webinar, you'll hear personal testimonials, be inspired to better navigate the stressful but exhilarating journey into NF young adulthood, and reflect on the sharing of personal challenges and triumphs of our esteemed panel of NF young adults.