Neurofibromatosis Northeast

Supporting the NF community in New England and New York

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You are here: Home / Guide for NF Patients and Caregivers Transitioning to Adult Care

Guide for NF Patients and Caregivers Transitioning 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.

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.

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Friends of NF Northeast

Upcoming Events

  • Falmouth Road Race – Team NF Northeast on August 21, 2022
  • 11th Coast to the Cure on September 10, 2022 7:00 AM
  • 2022 Fall Golf Classic on September 19, 2022
  • Hike for NF: Never Stop Climbing on September 24, 2022
  • Steps2Cure NF Walk – Hartford CT on October 2, 2022 10:30 AM

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9 Bedford Street, Burlington, MA 01803
☎ 781-272-9936 | Map & Directions

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Donated by the Klouda Family.
In loving memory of Richard Klouda, 1964 – 2017

NF Northeast Continues to Need Your Support

During the COVID-19 pandemic all of our events were cancelled or postponed. But, our programs that serve NF patients and families were not stopped. We continued to be here for our community, and now we continue to need your support. Thank you!

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Events

  • Falmouth Road Race – Team NF Northeast on August 21, 2022
  • 11th Coast to the Cure on September 10, 2022 7:00 AM
  • 2022 Fall Golf Classic on September 19, 2022
  • Hike for NF: Never Stop Climbing on September 24, 2022
  • Steps2Cure NF Walk – Hartford CT on October 2, 2022 10:30 AM

Introducing Sharon Klein

We are pleased to announce that Sharon Klein has joined Neurofibromatosis Northeast as our Executive … [Read More...]

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