Skip to main content

Whitepaper on Transition From Pediatric to Adult Healthcare

The Children’s Tumor Foundation is excited to share a new whitepaper on a vitally important topic to the NF Community:

Challenges in the Transition From Pediatric to Adult Healthcare Faced by Patients With Neurofibromatosis Type 1 

This white paper reviews challenges and unmet needs in patients with neurofibromatosis type 1 with a focus on those with plexiform neurofibromas as they transition from pediatric to adult healthcare. It includes important insights from experts in NF1—including healthcare practitioners, patients, and patient advocacy group members—who gathered for a roundtable discussion to provide their perspectives. The white paper summarizes the main topics from that discussion, as well as results from a premeeting survey sent to participants. Call-out text boxes are not direct participant quotes but are paraphrased from the live discussion.

Roundtable and White Paper Participants

  • Kim Bischoff – NF Network
  • Gregg Erickson – NF Network and NF North Central
  • Andrea Franson, MD – C.S. Mott Children’s Hospital, Ann Arbor, MI
  • Aidan Fraser – Children’s Tumor Foundation Junior Board Member
  • Brigid Garelik, MD, MPH – Children’s Tumor Foundation
  • Fouad Hajjar, MD – AdventHealth, Orlando, FL
  • Phioanh (Leia) Nghiemphu, MD – University of California Los Angeles, Los Angeles, CA
  • Tena Rosser, MD – Children’s Hospital Los Angeles, Los Angeles, CA
  • Tobias Walbert, MD – Henry Ford Health, Wayne State University, and Michigan State University, Detroit, MI
  • Aaron Wickersham – Children’s Tumor Foundation Junior Board Member

 

Print | PDF