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Clinical Care Advisory Board

The Clinical Care Advisory Board (CCAB) consists of a group of committed NF clinicians and patient representatives collaborating with CTF to identify ways to improve NF clinical care, educate patients and clinicians, and research relevant clinical care topics.

Main Functions of the CCAB

Identify and share best practices regarding NF care

Develop and maintain a network of quality NF care centers (NFCN)

Encourage the use of the NF Registry to advance NF knowledge and research

Approval of CTF educational materials

Advise CTF on matters related to the clinical care of NF patients

Current CCAB Projects

The CCAB and colleagues continue efforts to assess the delivery of guideline-driven care. The first part of the study surveyed clinicians on their awareness and agreement with current NF care guidelines. A patient survey is available every May through the NF Registry and asks patients and caregivers about their experiences with receiving NF care. This kind of input from the NF community is essential to understanding how CTF can improve clinical care for NF patients.

Additionally, the CCAB is assessing ways to improve health equity and developing an approach to establishing best care practices. CCAB members are committed to clinician education and networking by organizing monthly case conferences for NF Clinic Network members and organizing a half-day clinical session at the NF Conference.

The CCAB team and its committees continue to meet at least monthly to collaborate on how to continue to improve clinical care for the NF community. CTF also involves CCAB members in feedback and approval of CTF patient resources.

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Scott Plotkin, MD, PhD

Massachusetts General Hospital

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Laura Klesse, MD, PhD

UT Southwestern Medical Center

Clinician Members
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Oliver F. Adunka, MD, FACS

The Ohio State University

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Jaishri Blakeley, MD

Johns Hopkins University

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Gary Brenner, MD, PhD

Massachusetts General Hospital

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Jan Friedman, MD, PhD

University of British Columbia

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Jennifer Janusz, PsyD, ABPP-Cn

Children’s Hospital Colorado

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Justin Jordan, MD, MPH

Massachusetts General Hospital

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Bonnie Klein-Tasman, PhD

University of Wisconsin-Milwaukee

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Tena Rosser, MD

Children’s Hospital of Los Angeles

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Pamela Trapane, MD, MME

UF Health Jacksonville

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Nicole Ullrich, MD, PhD

Boston Children’s Hospital

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David Viskochil, MD, PhD

University of Utah

Patient Representatives
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Alwyn Dias, MSW, ACC

NF1 Patient Representative

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Reema Bogin

NF2-SWN Patient Representative

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Dale Berg

SWN Patient Representative

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Vanessa Merker, PhD

Massachusetts General Hospital

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Katie Metrock, MD

University of Alabama at Birmingham

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Kaleb Yohay, MD

NYU Langone Medical Center

CTF Staff
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Ledare Finley, MS, LCGC

Clinical Program Manager

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Heather Radtke, MS, CGC

Director, Clinical Programs